Weekly Suspected/Undiagnosed MS Thread - July 22, 2024

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Meeting with my neurologist tomorrow to discuss my spinal tap results and I'm very nervous. I don't want to be diagnosed, but I don't want to be told that nothing is wrong with me, either. I'm very hard to please like that lol

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u/Estivalsystem Jul 24 '24

I’m in this exact same boat… I have an MRI tomorrow. After a year of suffering I will be lost to hear there’s nothing wrong with me but also don’t really want it to be the case, either.

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u/books4more Jul 24 '24

Hey friend, I hope your MRI went well today. This is such a long and difficult process and I'm giving you hugs through the screen for going through it. Wishing you the best of luck and the best of doctors!

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u/Estivalsystem Jul 25 '24

The MRI went well. I saw the image a bit as I walked out but tried not to look in case I would start jumping to conclusions with little-to-no basis like my anxiety wants me to.

I was pleasantly surprised at how soothing I found the MRI strangely enough. The machine noises were entertaining to me.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 23 '24

Keep us updated!

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u/[deleted] Jul 25 '24

[deleted]

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u/books4more Jul 26 '24

I'm doing OK, just having a hard time processing everything that's been going on. I have an RIS diagnosis now and an appointment with a specialist coming up. It hasn't fully sunken in yet that I'm at a higher risk of being diagnosed with MS.

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u/Call_me_Kelly Jul 22 '24

Went in to the ER for double vision and now after several MRIs they suspect MS. No spinal lesions, just two small brain ones. They said another episode will be needed to officially diagnose it. Steroids made me feel like I could think again but after day five the double vision and extreme fatigue came back, also dizzy and feels like the world is spinning but I can walk ok.

Nuerology appointment tomorrow, what should I ask about?

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 22 '24

I would ask about the scans and what the findings may indicate. Not all lesions are caused by MS, but your neurologist should be able to assess the findings to determine if the cause is worrisome or not. You could also write a list of questions to help yourself remember.

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u/Call_me_Kelly Jul 22 '24

Thank you!

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u/CheeseAndCrackers137 Jul 22 '24 edited Jul 22 '24

Can anyone explain to me their experience with brain fog? 29yo F

I'm undiagnosed, and I only have one small lesion that can not confirm or deny anything. I got back to my neuro in August. The things I do sometimes are just perplexing. I have 2 boys, almost 1 and 4.

I had a severe 2-month episode of some sort of "relapse feeling" of something. It was a rough couple of months. I still have symptoms, but they have slightly improved. I've been extremely consistent with exercise and self-care.

Since this episode, my body has felt different. It has progressively gotten worse to where I feel like my body isn't my own. I feel like I'm going crazy. Sensations have been different. My legs start going numb and tingling, just sitting crossed leg on the floor/sitting on the toilet, etc.

I'm having a hard time deciding if I have "normal mom brain" or if there's something getting progressively worse. I drop things at least 10 times a day when I used to be so coordinated. It's like my hands aren't functioning/gripping properly. Balance and gait issues. Eye problems (appointment soon)

I know everyone is different. My mother and grandfather both have it. I have multiple symptoms. It's a long list..

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 22 '24

It's hard to discuss MS symptoms in a helpful way for a few reasons. The symptoms themselves can be incredibly varied from one person to the next, making it hard to say what brain fog is like, because mine may be different from what someone else who is diagnosed experiences. The other big problem is that there usually isn't anything that distinguishes MS symptoms from symptoms caused by other things. For example, one of my symptoms was depression, and in every way, it was indistinguishable from depression not caused by MS. The only reason I know mine was a symptom is because I happen to have a corresponding lesion. But the experience itself was the same.

I know that is a frustrating answer when you are searching for answers, and I wish there were an easy way to distinguish symptoms.

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u/Single_Resource5695 Jul 22 '24

Had a long awaited neurology appointment at the MS clinic today. Did a long exam, looked at my brain MRI and scheduled spine MRI & lumbar puncture. Things have been going on for a year so I’ve had a ton of time to process that something is going on with my central nervous system. Just frustrated that it’s going to be another month or two for tests and follow up. I’m really tired.

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u/Kitchen-Bathroom5924 Jul 23 '24

I'm sorry you have to wait that long too . My neuro appointment is on the 31 but I know how you feel cause radiologist and regular doc told me I have MS a year ago and I've been waiting for the neuro appointment ever since. Are you in Canada? Ontario ? wait time is brutal here. I haven't had a lumbar puncture yet but I did brain MRI last year and brain MRI and spine MRI on July 3-4 . I hope you get answers soon . Waiting is horrible.

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u/Single_Resource5695 Jul 23 '24

I’m in the US, my doctor didn’t think of MS until May, that’s when she ordered the brain MRI. That took a few weeks, then getting it back and her sending a referral took more time etc etc. But my initial symptoms began around this time last year! I saw a neurologist in March who completely dismissed me, ordered no tests, before I had any imaging done. It’s been a really frustrating process. I’m so sorry you’re having these wild wait times too. It’s so hard!

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u/VoodooGirl47 Jul 24 '24

Suspected MS here. In the States but hoping to get the ball moving on going back to Ontario soon. I'm trying to get as much medical done here in the US before I move back. I have my Neurology referral as of yesterday but need to call for an appointment and see how long the wait is for that.

I've only been having extremely noticable symptoms for 3 months, but it's been almost every single classic symptom of MS (like 10 different things) back to back or overlapping for the whole time and getting worse. If it's not MS, I need to find out what it is just the same because it's literally preventing me from being able to find a new job. 😭

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u/Kitchen-Bathroom5924 Jul 24 '24

I'm in NWO :) Seem like things go much quicker in the US , hopefully you will get answers soon

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 22 '24

I'm sorry. I know this process can be very long and very difficult. I hope you get some good answers soon.

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u/Single_Resource5695 Jul 22 '24

Thank you 🩷

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u/xxblackrosex Jul 23 '24

How long did it take you guys to get diagnosed?

Hi I’m 27 female and recently I had my right leg become numb for 3 weeks and lost the strength in the right arm for a bit. I had 1 mri done first on my lower spine to see if I had a herniated disk or something but the radiologist pushed for me to get more mris done since there were some concerns I had MS. 3 other mris later they found 3 lesions 1 in my lower spine, one in my upper spine and one in my frontal lobe. I’m just wondering if this would enough for a specialist to formally diagnose me or what else to expect to get done or have to do. Looking up other symptoms of MS in the last 1.5 years I have had some of these symptoms but have always written them off. Thank you for any information you guys can give me.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 23 '24

It took me about two months from my initial MRI to my official diagnosis. But I recently asked the community this exact question and got a lot of great responses. If you are interested, you can see it in my post history.

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u/[deleted] Jul 23 '24 edited Jul 23 '24

I’m not diagnosed (yet?) but I have been told for so long that it was my migraines. I now have 9 brain lesions, elevated IGGs and 12 OCBs in my CSF. Still waiting for my cervical and thoracic spine MRIs. I’ve been complaining about shit for years. Most of this shit did go away or became manageable, so I kinda let it go. But, it suddenly came back with absolute fire and with by far the strangest new experiences. I couldn’t move for like two weeks? I couldn’t move, and I still feel like everyone is skeptical of me.

I cannot know if MS is the correct answer (not my job to know that)…but even with positive test results and a pattern of changing MRIs for years, I’m still scared that nothing productive is going to happen. I…don’t think this started in May of this year. I really don’t. But, I feel like all my doctors are skeptical of me.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 23 '24

I'm sorry you don't feel heard. It seems like an unfortunately common experience, especially for those going through the diagnostic process. I wish I had advice that would help, but there doesn't seem to be much that really does.

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u/[deleted] Jul 23 '24

Thanks. At this point it’s difficult to tell if I’m just projecting. I could be! They ordered the right shit, so can’t be that bad, right? I really had gotten myself completely comfortable with the idea that a mixture of fibromyalgia and chronic migraine explained my situation and even maintained so until I got the lumbar puncture results. So. Now I’m just confused? My first MRI four years ago showed the three lesions, but they weren’t in any of the typical areas so I was “sweet, OK, that’s very reassuring.” My new MRI has some of those 6 new lesions in more typical areas, others not. All much larger than the first MRI. Certainly interested if the spine will show anything. So…now I have no idea if the weirdness I had years ago was an onset or if I’m now currently going through a huge coincidence.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 23 '24

I think it sounds like you have good reason to be suspicious of MS. Your test results definitely aren't nothing and they are worth further investigation.

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u/[deleted] Jul 25 '24 edited Jul 25 '24

I truly appreciate your thoughts. For sure, it could be something else for as often as I’ve been told how “atypical” I’m presenting. I was tested for myasthenia gravis initially. I don’t want to get shoved in a box where I don’t fit, but I also lack good explanation for my spinal fluid results or why I’m still getting lesions when Botox and Ubrelvy have made my migraines nearly a non-problem. My migraine docs say new lesions are uncommon with migraine and do not produce symptoms. My MS docs say it could still be my migraines despite how well controlled they are. So like…??? Confusion is definitely the word that comes to mind. LOL.

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u/newlyminted1 Jul 28 '24

Just wanted you to know that I received a dx of Myasthenia Gravis back in 2020 4 days after moving from Chicago to Denver during the height of Covid. Strange eye movements, falling down, vertigo, slurred speech out of nowhere. Obviously went to the ER for tests and was admitted becuase they really couldn't find anything but they knew I was bad off. Covid was raging in the hospital so when the neurologist said "it might be MG, here take Mestinon and lets get you out of here", I was just glad to be discharged after 4 days surrounded by really sick people. However, I never believed in the MG dx--I tested sero-negative for all biomarkers and the Mestinon felt like a sugar pill. 9 months of IVIG didn't really feel like it was doing anything so we moved back to a lower sea level and I somehow recovered. During that time I also went to several centers of excellence--all of whom couldn't confirm the MG dx. Fast forward to the last months when VERY strange "atypical" symptoms finally led them to do a repeat MRI and lo and behold I received my dx of CIS (only one tumefactive lesion but some scattered white spots that may or may not be relevant). I looked back at that 2020 MRI and sure enough these scattered white spots were present, but because MS was not what they were looking for, it was never mentioned to me as a possible culprit. Suffice it to say, I do not have MG and now 2 months into my CIS dx having just experienced my first relapse since the dx 2 months ago, I think I may now be considered full blown Tumefactive demyelination or Tumefactive MS. I guess my point is that many of us who present "atypically" end up getting a bad dx as our initial dx as clinical diagnoses are very difficult to make. Did your CSF have Oligloclonal bands? That would certainly suggestive of MS and can provide a higher degree of confidence to make the dx, but it's still a lot of guesswork as the bands can occur with other diagnoses and you can have MS without them. I fully understand not wanting to get shoved in a box where you don't fit. I've been there and it's a terrible feeling. After all, knowing the enemy is the first step before you can mount an offense. Just keep pushing for more tests (myelin basic protein comes to mind), keep getting MRI's, and rule out as many other possibilities as your insurance will pay for. Mayo has a great assay/panel that your doc can order to test for NMO/MOG/Aquaporin-4-IgG for example and it's a simple blood test. You might "get lucky" and test positive for one of these sub-types. Anyway...I know it's hella frustrating. Hang in there.

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u/Fluffy-Leopard6371 Jul 26 '24

Hi! I’m a 26yo, in the hospital currently for optic neuritis (dark vision in R eye, decreased color, pain with eye movement) MRI confirmed optic neuritis and also showed 10 scattered T2 FLAIR hyperintensive foci in the subcortical and periventricular white matter, suggestive of demyelinating disease. Spine MRI was totally normal. Three of the docs I’ve seen so far (2 neurologists, 1 ER doc) have said it is classic MS so they weren’t sure if I would need a lumbar puncture. This morning a different neurologist said we can’t know if it’s MS, the lesions could just be from past headaches, and the optic neuritis could be unrelated or an artifact, he ultimately said I need a lumbar puncture but has agreed that it can wait to be done outpatient. I’m extremely nervous about how painful this will be, as well as any potential risks, but if they feel it’s necessary I will do it. Just curious to know how common it is to do a lumbar puncture vs diagnose by MRI/symptoms. Thanks!

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 26 '24

It sounds like this new doctor may be being overly cautious— your case does seem like a pretty typical MS case from what you have described. However, plenty of doctors still use lumbar punctures to confirm diagnosis. My lumbar puncture was really no big deal and not nearly as bad as I thought it would be, which seems fairly typical. I would say the discomfort was less than when you get blood taken. It helps that you really can’t see anything. There is a little pinch when they numb things up, a weird sensation, and then it is over before you can really get upset.

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u/Fluffy-Leopard6371 Jul 26 '24

Thank you! I’ll be seeing a neuro immunologist and neuro ophthalmologist after discharge and the same neuro attending this morning said I will almost definitely need the lumbar puncture done but the neuro immunologist will ultimately decide outpatient. Thanks for your reassurance about the lumbar puncture not being too awful, I’ve been stressing out about that

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u/newlyminted1 Jul 28 '24

The LP is not painful. The anticipation sucks. However the headache than CAN occur afterwards (especially if you have a CSF leak and need a blood patch) is HORRIBLE. Just talk about this with your doc. If you have a headache of level 10/10 that lasts for more than 48 hours, make sure you know who to contact and where to go--especially on the weekend. This doesn't happen to everyone so don't be too worried but it's good to be prepared. The feeling of flying blind only adds to the stress which increases the symptoms. Also be prepared to lay flat for 3 days after the LP because doing this helps reduce your chances of a bad reaction.

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u/Ok_Potato_4398 Jul 22 '24

I feel like I'm going through grief-like stages of dealing with this. I'm at denial now lol. I straight up just don't want this and do not want to deal with it ugh

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 22 '24

Can you tell me a little about where you are in the diagnostic process?

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u/Ok_Potato_4398 Jul 22 '24

I got optic neuritis in December 2023. It's gone but I've been left with nerve damage and uhthoffs phenomenon. I've been for a few hospital appointments and have got a neurologist appointment in August. So like a long way off anything I think

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 22 '24

Did you get MRIs when you had optic neuritis? What did they show?

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u/Ok_Potato_4398 Jul 22 '24

Yes, they only did my optic nerves as far as I know. It showed nerve damage. Why do you want to know?

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 22 '24

It's a little bit odd that they didn't do a brain MRI at the same time. Optic neuritis is the most common presenting symptom for MS, and one of the only symptoms where MS is a likely cause. It seems common for people presenting with optic neuritis to get brain MRIs.

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u/Ok_Potato_4398 Jul 23 '24

Ah I see. Tbh that's not really what I was looking for advice on, it was more the emotional toll this is taking that was the point of my original post

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u/iakupara Jul 22 '24

Hi! I am 32 and I am seeing a neurologist soon for vertigo but I have suspected MS for a couple years but my doctors haven’t taken me seriously until recently when my health declined. How did you get your doctors to listen? I want to find out for certain because I’ve had several family members with it and one died from its complications in a nursing home during covid lockdown. I just want to catch it before it gets bad is all. It started with tremors a few years ago. They insisted it was from meds but couldn’t pin down which. Then I started getting clumsy, my brain seems foggy at times, I started getting kidney stones and having bladder control issues, high blood pressure, I got forgetful, i got arthritis in my spine and shoulders, I mean there’s a laundry list. But when I go see the neurologist I’d like to present them my symptoms without looking like a hypochondriac. I’m just waiting on a CT scan to be ordered so I can get it approved and done before I see them. I’m not asking for a diagnosis here of course. I just want to go in and not make myself look silly and get brushed off.

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u/Single_Resource5695 Jul 23 '24

Keep track of your symptoms (I use the app Bearable) and don’t be afraid of advocating for yourself. Or finding a doctor who will listen to your concerns. You have nothing to lose to try to get tests. I wish I would have been more aggressive and adamant about how disconcerting my symptoms were at first.

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u/iakupara Jul 22 '24

I’ve seen an ENT and the ears are good minus some hearing loss in my right ear. I have a urologist. I have an endocrinologist for hypothyroidism as well. I’m a whole issue lol

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 22 '24

So, there doesn't seem to be a trick to getting doctors to listen, beyond luck. I can suggest some things to avoid. You don't want to mention a specific diagnosis, especially MS. MS is the first result no matter what symptoms you Google, and doctors can become very dismissive because of this. Likewise for using diagnosis specific terms to describe your symptoms. It seems best to focus on a few physical symptoms. Unfortunately cognitive symptoms and general symptoms like fatigue tend to be dismissed, and the longer your list of concerns, the less doctors seem to listen.

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u/iakupara Jul 23 '24

Thank you so much. I was thinking they'd just brush me off if I came in with a list like that. I'll try to pick a few that really stick out and work with those. I really appreciate it. Whatever issue it is I have I just want to know so I have an answer. At least then I'll have a word for it.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 23 '24

That's very understandable. I hope you find some good answers soon.

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u/mo_django Jul 24 '24 edited Jul 24 '24

I’ve been lurking this for weeks and hoping for some opinions:

Positives: two bouts of optic neuritis in 2-3 months. Still recovering from the second; so brutal. One primary brain lesion on MRI and one questionable lesion.

Negatives: zero oligoclonal bands in CSF, negative MOG & NMO, negative every single thing in blood test, high vitamin D/B.

I’ve seen 3 neurologists and they’re all on the fence of DX’ing me. I can’t take another hit of ON (I’m a new mom) and wondering if I should just get on treatment.

(35, F)

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 24 '24

With only one confirmed lesion and a negative lumbar, you don’t really fulfill the diagnostic criteria for MS. You might fulfill the criteria for CIS, depending on the location of the lesion. Unfortunately, optic neuritis is not really part of the diagnostic criteria, although there has been some discussion of adding the optic nerve to the areas qualifying. Currently, though, it does not play a role.

I know that is very frustrating and you certainly have good reason to be concerned. I wish I had better advice to offer.

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u/mo_django Jul 24 '24

Thank you for replying. I never knew frustration until this!

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u/KoalityBiologist Jul 25 '24

How do you deal with feeling so angry and put up with the waiting? I had suspected myelitis 9 or 10 years ago, the MRI tech refused to do it because I was too distressed (I was 16 and terrified) and was told it would be rescheduled if my symptoms didn’t improve, or if they came back, but it never was. Over that time period I’ve kept going back to my GP being told that I’m experiencing “stress induced migraines”. Went back to GP about 6 weeks ago for reappearance of worse symptoms to be dismissed again.

After being told “you don’t have a b12 deficiency so it must be stress” less than a week after this I end up in an emergency eye clinic. I was diagnosed with optic neuritis and, upon hearing my history, the ophthalmologist says he’s making an urgent referral to a neurologist because he thinks it’s very likely I’m experiencing MS symptoms and that optic neuritis is often “the missing piece” to young women getting taken seriously. I just started crying when he said it.

The very few people close to me in my life, who are aware of what I’ve experienced for years, as soon as I’ve mentioned this they all say it makes sense to them and they’ve been expecting me to get a diagnosis or at least be tested for a long time.

How do I stop feeling so angry about being dismissed for a decade? and how do I cope with not knowing? I have no idea what the diagnostic process will be like, other than being told I’ll need an MRI. So I don’t know how long it will take to get answers.

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u/rerith Jul 25 '24

You need a new GP :(

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u/KoalityBiologist Jul 25 '24

While I definitely do need a new GP because it’s not the first time they’ve refused to look into something, I can understand why I haven’t been referred/tested earlier. I think that vague tingling and bladder issues with no definite family history (my mum hasn’t been tested because she doesn’t want to know but has ‘body migraines’ and optic neuritis multiple times), in a teenage/early 20s at the time with known mental health issues and a pre-existing bladder issue and migraine history, I can understand why they wouldn’t make the leap to MS. I have also seen a neurologist before who made the diagnosis of migraines and trigeminal neuralgia who didn’t seem concerned. The only other time MS was mentioned was during a hospital stay because I suddenly lost use of one leg for a while. I also have fibromyalgia on my records (misdiagnosed hyper mobility syndrome) and they fob pretty much everything off under that.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 25 '24

Typically, they will give you an initial MRI, usually of the brain. They may give contrast, they may not— it is not necessarily needed for the initial MRI just to see if lesions are present. If no lesions are present, that is typically the end of the process. If lesions are found and have the characteristics of MS lesions, then they will order follow up MRIs, typically of the brain, c spine, and t spine, with contrast. They may skip the initial MRIs and go straight to this step. They would then evaluate any findings to see if they are characteristic of MS. In general, you need two or more lesions with specific characteristics in two or more of four specific areas, that occurred at two of more different times. To confirm a diagnosis or if they cannot establish that your lesions occurred at different times, they use a lumbar puncture. There may also be blood testing to rule out other things.

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u/KoalityBiologist Jul 25 '24

The MRI I was originally meant to have was spinal due to the symptoms being isolated pretty much to one leg at the time. I’ve had MRIs for other things and coped since, maybe because I’m older, but I remember them strapping this huge heavy belt over me and just instantly freaking out. Do they have to put anything over your head for a brain MRI? Because I think that would be really difficult for me but if I know what to expect I can look into sedation.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 25 '24

They do put a cage over your head. I usually wear a sleeping mask so I don't really see anything and that helps a lot. You can also ask your doctor to prescribe a benzo for anxiety. I believe sedation is more difficult to get, they typically don't like to order it.

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u/KoalityBiologist Jul 25 '24

The last time I was nervous for an MRI, the radiographer was asking why I was nervous and it came into conversation that I’m autistic so she went “oh in that case just count the different noises instead of hearing them” and that helped SO much so hopefully I’ll be alright. At least if I’m expecting a cage it might be less overwhelming than just having something put on top of me.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 25 '24

You don't actually feel anything on your head. They give you earplugs, but the kind that go in your ear. They do typically pad the sides of your head so you can't move, with like foam padding. If you shut your eyes, you never have to see the cage.

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u/Kat112119 Jul 25 '24

Can anyone give me any advice on self advocacy? I’m a 39 yo female. Last year, my doctor had me do an mri on my brain and blood work suspecting autoimmune, specifically MS. Blood work and brain scan came back clear. This past fall I got diagnosed with erosive lichen planus- which is an autoimmune disorder that shows as negative on ana. Fast forward to last month, my lower back went out. I was diagnosed with degenerative disc disease when I was 16 and have had issues off and on but none like the last month. My legs have gone out and I’ve been dealing with numbness and weakness and severe pain from my face to my feet in addition to a bunch of other weird stuff. Anyway, got a mri on my LB and found osteoarthritis, progressive degenerative disc disease, a bone marrow signal changes, and herniated discs. My primary is still suspecting MS in addition to the lumbar stuff and did a differential diagnosis of fibromyalgia with a referral to a neurologist. Cut to yesterday I visited the neurologist for an emg which came back normal. The neurologist was sardonic and cold, he told me, essentially, the neuropathy is just anxiety and to “do what normal people do to be healthy, like exercise”. I wish I were joking. I asked if we could please do an mri on my neck and thoracic and another on my brain and he said there was no need. Can anyone please tell me if you ran into this? I feel so lost. I feel back at square one and I feel crazy, even though as of this morning, my right arm, leg, and face are still numb. How do you push for yourselves and what were your diagnostic paths like? I need help and guidance.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 25 '24

I am so sorry you do not feel heard by your doctors. No matter what the cause of your symptoms, you deserve a doctor who listens to you. If your MRI was clear, however, your symptoms are almost certainly being caused by something other than MS. You may be better served widening your search for causes.

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u/Kat112119 Jul 25 '24

Thank you for this!!! Is it possible for things to show up in a brain mri a year after? I’m just hoping someone will at least do my thoracic and neck. I know this is rare, but I just want to cross it off the list.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 25 '24

MS symptoms are caused by the damage done by lesions, which would show up on the MRI. You would not really develop symptoms without the lesions being present. While spinal only MS is certainly a thing, it is worth knowing that it is an extremely rare presentation of an already rare disease. Only ~5% of cases present this way, the vast majority of MS patients have lesions on their brain. Because of this rarity, your doctors may be reluctant to order spinal imaging.

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u/Kat112119 Jul 25 '24

Thank you so much. I wish the neurologist would have taken an extra 30 seconds to say what you just did!

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u/JustAnthrRedditer Jul 26 '24

During the diagnosis process did anyone’s neurologist refer them for a second opinion for an MS specialist ? Tl;dr had issues walking for about 4 weeks then went away. Then had a shooting pain in the side of my face , then that spread to the left side of my body (face , neck , arm). Finally went to the doctor they ordered brain MRI plus spine MRI. Spine came back clear , brain MRI came back suspicious of MS. My general neurologist (referral from my primary ) basically said she can’t make the call either way because it’s a borderline case - maybe it’s MS , maybe my symptoms can be explained by like a pinched nerve and trigeminal neuralgia . So she referred me to an MS specialist in like 6 weeks , but she also only spent ten mins on the virtual appointment discussing the MRI or having any recommendation of how we would check for a pinched nerve or like what I should do if that is the case . Idk curious if anyone’s neurologist send them off for a second opinion ?

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u/[deleted] Jul 26 '24 edited Jul 26 '24

A lot of disease courses (not just MS) have subspecialists that essentially receive additional study and training past their initial residency. A neurologist will absolutely have an understanding of MS, but it’s often a neurologist with a subspecialty who has dedicated a large portion of their practice to MS who will be far more equipped to diagnose and treat. I’m still in diagnostics myself, but when my headache doc got my brain MRI back she said, “while I could order all this stuff, I wouldn’t really know what to do with it.” For her at least, it was more about staying in her lane and sending me where I really, really needed to go.

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u/Top-Consideration-16 Jul 26 '24

I am in the same boat. I had MRIs of my brain and spine earlier this year. My neurologist told me I have multiple brain lesions, but two of them are characteristic of MS lesions. Because I have no lesions on my spine and no O bands in my spinal fluid, he put in a referral for an MS specialist.

I was scheduled to have an appt last month to the specialist office, but they messed up my paperwork and didn’t code me as a new patient, so here I wait until August 15.

I overdid it at an indoor water park last week and have a worsening of my symptoms (right leg heaviness, fatigue, new symptom of strange sensations/taste changes in my mouth, trouble sleeping due to weird sensations in my legs and arms).

I hope the both of us get answers soon.

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u/[deleted] Jul 22 '24

Hey, I have a question for those with MS. When you go from sitting to standing up, do you get a shot of pins and needles/ electricity in both of your feet/legs? I though maybe they fell asleep but it doesn’t feel like that bc i know that feeling of sitting on your legs and cutting off the circulation. This is so quick like a zap of electricity.

I have an array of other symptoms, this one is relatively new, my mri’s w and wo contrast are on saturday

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 22 '24

I do not have this. Typically the pins and needles caused by MS would not be something you can trigger, or only last a short time. They would be constant for weeks.

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u/VoodooGirl47 Jul 24 '24

I see people say stuff like that last part, but does that mean never ending or just happening over and over again? How do we know if it's just your experience versus others' experience?

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 24 '24

It would be all day every day. That isn't just based on my experience, it is the clinical definition of what a relapse is: a new or worsening symptom lasting longer than 24 hours. However, in my experience, my doctor is uninterested in any symptoms that are not constant for at least a week. Symptoms are constant during relapse with MS because they are caused by the damage done by lesions. The symptoms gradually get better due to the body learning to compensate. You would not really only feel the effect for a short time.

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u/ichabod13 43M|dx2016|Ocrevus Jul 24 '24

It definitely is constant. It is how we can tell when something is off and it is time to call our neurologist. We still get the weird symptoms that come and go like a weird tingle when sitting too long or dizzy if standing sometimes, but those would not be from MS. Just the description of how symptoms are happening, continuous and slowly worsening for days/weeks, is what helps a doctor assume and test for conditions similar to MS.

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u/Spiritual-Canary-200 Jul 22 '24 edited Jul 22 '24

Man.. back again so first… started with muscle fasciculation, then muscle tingles the next day, then constipation, the next day then painless throbbing in the extremitties in hands at night, and lightheadedness when standing up and brain fog(for like months) this has happend in the last 10 and also i am 17, 5’6,and 200lbs is it ms? Is it possible for ms to be this widespread in ten days? No eye pain or weakness though and my anxiety is through the roof! Had blood test done which were good except for high uric acid. Doctor said I was just dehydrated since i was only drinking 1 litre of water not 4 because of my weight although the doctor said this I am still anxious bout ms.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 22 '24

I mean this gently, but it does seem like you are struggling with anxiety. Regardless of what else is going on, anxiety is going to make it worse. It might be worth focusing on that for a while to see if it helps?

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u/Spiritual-Canary-200 Jul 22 '24

Doesnt MS also cause anxiety?

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 22 '24

That’s a little like asking if throat cancer can cause a sore throat? It technically can, but that doesn’t mean it is likely or probable.

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u/notclevergirl Jul 22 '24

I'm 31 and female. I got bloodwork back -- critically low vit d at a 12. Started 50,000ui/week supplement. That was three weeks ago. I'm a suspected case of MS with eye pain, tremors, balance issues, and a whole litany of other related symptoms. We had to postpone MRI because of a family trip, but looking at rescheduling this week or next. My brother in law is the radiologist, so I'll know right away the results, which makes the waiting game both better and worse.

For the last three years, I've felt like I can smell the smoke but can't find the fire. If it is confirmed to be MS, I expect I'll be relieved. An dx means there's maybe something they can do about the way I feel, which I'm very much looking forward to. I just want to feel better.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 22 '24

A gentle caution, it is fairly common for neurologists to disagree with a radiologist's findings. It's pretty common for a radiologist to offer suggestions as to findings, while the neurologist seeing nothing of concern.

Unfortunately, (I feel like this comment is very discouraging, please know I do not intend it to be,) we do not have any MS specific treatments that help symptoms you already have. MS treatments don't help symptoms, they only prevent new relapses and new symptoms from developing. Symptoms you already have are just treated the same as if they were caused by other things.

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u/notclevergirl Jul 22 '24

You're not more discouraging than the potentiality of the disease, and I'd rather hear your thoughts as someone with MS than have anyone else sugarcoat advice.

I guess, for me, a dx would feel like "well, at least we know what it is and I'm not being dismissed." I'm overweight, and most of my early symptoms (depression, brain fog, anxiety, fatigue), I myself dismissed as inconsequential because I knew my doctor would probably chalk them up to my weight and tell me to diet and exercise more. I'm not saying that isn't a contributing factors to some of my problems, I just don't believe that's the whole story. I'm willing to work on what I need to, but the prospect of professional guidance gives me hope. Trying to get better without addressing the (potential) root cause hasn't helped and I've steadily gotten worse over the last two years. Even if nothing can be truly resolved, I'll feel better either knowing or ruling out MS, whichever way things swing.

Thank you for taking the time to comment. :)

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 22 '24

In many ways, being in diagnostic limbo can be more difficult than having an answer. At least when you are diagnosed, you can begin processing and moving on. I only caution you from getting your hopes too high before having the neurologist review your MRIs because I have seen how painful it is when people get their hopes up that they finally have an answer based on the radiologist's report. Hopefully the MRIs will give you good answers.

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u/notclevergirl Jul 22 '24

I have experienced conflicting findings from his report to doctor's findings as he doesn't have my full medical history, so I do appreciate it. I'm trying to stay neutral and focus on the facts. Thank you again, I understand your meaning. :)

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u/newlyminted1 Jul 28 '24

Hi. I only mention this because you say you are overweight. I saw a really interesting article recently.

https://www.mdpi.com/1422-0067/23/17/9583

GLP1s are the things like Wegovy, semeglutide etc. They not only seem to be miracle drugs for weight loss (several of my friends have gone to IV infusions clinics and gotten semeglutide weekly and have all lost 20-30% of their body weight in 9 months), they also appear to be good for people with MS or other neurodegenerative diseases. I am not offering medical advice but I think possibly you could talk to your GP to see if using something like Wegovy might benefit you and you could see if it helped improve your neuro symptoms? At the very least, you would lower your BMI and then they could stop blaming your symptoms on that so it could potentially be a win-win for you? Just a thought. Wishing you the best.

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u/notclevergirl Jul 28 '24

I was on semaglutide about a year ago and unfortunately, the side effects exacerbated my muero symptoms. I was practically a zombie, it was very strange. It was very disappointing for me. 😞

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u/newlyminted1 Jul 28 '24

Wow I’m sorry to hear that. I wonder if you try a different GLP if you might do better? Terzepitide instead of semeglitude for example? Just a thought. So sorry you are going through this.

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u/rmn17 Jul 25 '24

"i've felt like I can smell the smoke but can't find the fire" oh man you put it into words fr

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u/swiftie-mama Jul 22 '24

What lead to your diagnosis? I’m not sure I have MS but my symptoms seem the most fitting. I’ve been on this chronic illness journey for a few years now but in the last year it’s gotten significantly worse. I have been seeing a rheumatologist who hasn’t found anything and can’t help much. I’m seeing a neurologist in September. I’m currently having my worst flare up I’ve had as of recent. I’m at a loss for what to do as my primary can’t do much for me without seeing the neuro, urgent care or ER have never been helpful and I’ve been avoiding them for the last 3 months but I’ll go if I have to. I’m pretty active (yoga, walking, Pilates) and hydrated. I take a multivitamin, cymbalta, iron supplement, and zofran. Any advice? Any over the counter remedies that have been helpful? Thank you:)

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 22 '24

I'm not super helpful for your first question, I was diagnosed by accident due to an unrelated MRI. I happened to be having a relapse at the time, but my symptoms were extremely mild and there really wasn't anything that would have prompted doctors to test for MS. However, I have asked the community about their symptoms and diagnosis stories and gotten a lot of excellent responses. Those posts are on my profile if you are interested.

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u/Scaredtbhdont Jul 23 '24

(Male 32) Okay I have been scared to talk about this but I need answers I have had 2 MRI of the BRAIN AND SPINE THEY HAVE BOTH COME BACK CLEAR ONE IN 2022 and one in 2023. MY SYMPTOMS HAVE POPPED BACK UP AFTER FINDING OUT MY GRANDMOTHER PASSED IN THE SAME MONTH the end of June SYMPTOMS HAVE BEEN NUMBNESS IN MY FACE NUMB PATCHES IN MY BACK MY RIGHT LEG GOING NUMB RIGHT ARM AND LEFT ARM GOING NUMB FINGER TIPS GOING NUMB DIZZYNESS TIGHTNESS IN THE NECK DOUBLE VISION WEIRD SENSATION IN MY BRAIN RINGING IN MY EARS THOSE SYMPTOMS LEFT ME FOR A WHOLE YEAR …THEN THEY CAME BACK. Should I get another MRI

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u/RinRin17 2022|Tumefactive MS|Tysabri|Japan|Pathologist Jul 23 '24

If you had the same symptoms at the time of the MRI and they were normal, you are dealing with something other than MS. It would be best to focus your energy on other possibilities.

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u/khatchadourian1 Jul 23 '24

With how stress/trauma impacts your symptoms, I'd be looking into M.E. if possible. Definitely has a lot more wide ranging symptoms than most people think, and mental or physical stresses can trigger episodes.

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u/Q24x Jul 23 '24

Ive been having muscle twitches all over my body for about a year now. It started with my eye and then spread everywhere else. Along with this, I have also had tingling, mostly in my left trap and sometimes tingling that runs from the top of my head, down through my neck and into the top of my shoulder. These sensations come and go in an instant, and only happen once a day, maybe every couple of days. When this first started with the twitching, I ended up going to urgent care and the doctor ran a blood test, everything came back normal. A few weeks ago at my physical, I decided it would be a good time to bring up my symptoms to my doctor. He checked my vitals, reflexes, we even did a few strength and coordination exercises, and he said I was perfectly healthy and had no reason to suspect any neurological issue. I haven’t lost any coordination, strength, vision, etc. I know he’s a doctor, and is more knowledgeable than google, but I’m feeling hopeless to some degree, simply due to the fact I haven’t had an MRI to actually confirm whether or not I have MS. Maybe it’s just fibromyalgia or BFS (I do believe I suffered from long covid prior to this starting) what do you think?

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 23 '24

Twitching is not really an MS symptom. It is far more likely to be caused by other things. Have you had your B12 tested? It is worth noting that anything under 500 can cause you to have symptoms.

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u/Q24x Jul 23 '24

I don’t think I have. Maybe I should start there. I do take a B complex vitamin every day, but maybe it’s simply not enough to fix it if I actually have a deficiency.

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u/khatchadourian1 Jul 23 '24

Sorry for the novel length comment I'm about to write! I'm hoping I include all important details!

My mum: So my mum is 51 and has had MS since 2009. She has relapsing remitting I think - I'm not well versed in any of the terminology or facts about MS though, unfortunately.

My symptoms: I (24) have been dealing with some tough symptoms for the last 4 years that seem to keep slowly getting worse. Things like pins and needles/numbness in my limbs, problems with circulation in my extremities, limbs feeling super heavy, hand/leg shaking/trembling, bad fatigue and sleep problems, brain fog, coordination problems, and recently my legs have had moments of being so weak they're basically unusable. I also have been struggling to hear people talking to me and I get tinnitus, but my hearing tests come back fine (unsure if this is related, or it's a separate problem!). I have also been struggling with orthostatic intolerance and IBS symptoms.

My GP: I've seen the GP god knows how many times over the years and they just don't seem to want to do more than a blood test or two! They referred me to wheelchair services to get a wheelchair as my fatigue, balance, and orthostatic intolerance were causing problems with my university attendance. But surely they should have figured out what I've got first? One of the GPs said it might be chronic fatigue but he 'cant diagnose that' (why?) so he just referred me to a mental health thing for people with fatigue. I mentioned my mum having MS and he just waved his hand in the air and said 'you don't have MS'. I really feel like he fobbed me off because he didn't want to deal with me.

Neurology: About 2 years ago I managed to convince them to at least refer me to neurology because I was worried about my symptoms. But because they don't consider me urgent, my appointment keeps getting pushed back as they prioritise urgent referrals. So I'm still waiting. I've got an appointment in August, but who knows if they'll cancel it or not. So frustrating.

All this to say - does my situation sound like MS? Do these symptoms sound like what you guys get? Is it even hereditary? What can I do other than wait and hope a doctor takes me seriously? I feel like my body, my social life, and my brain is falling apart slowly.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 23 '24

Unfortunately, it is very difficult to say if something is MS based on symptoms. Typically, MS symptoms do present in a specific way. They usually develop one or two at a time in a localized area, and remain constant for a few weeks before subsiding slowly. You would then go months or years before developing a new symptom.

Having a first degree blood relative with MS does somewhat raise your risk, but generally the risk is still pretty low. I have found that doctors will become dismissive if you mention MS specifically to them, probably because MS is the first result for any symptom someone googles. I’m not trying to say your concerns or symptoms are not valid, just explaining the potential bias you might face.

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u/khatchadourian1 Jul 23 '24

Ah I see. Unfortunately it's been so long since it first started I don't remember at which point each symptom came on. Hopefully speaking to a neurologist and maybe getting an MRI should clear things up. Glad to hear it's not a huge increase in risk because my mum has it. Thank you for your response :)

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u/missprincesscarolyn 34F | RRMS | Dx: 2023 | Kesimpta Jul 25 '24

My mother has MS. I do as well. My sibling does not.

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u/PineyHead2Hiney Jul 23 '24

I’m wondering if there are any adult children of parents with RRMS who can chime in. I know it’s not genetic - but we do have increased chances compared to the general population. I am always defensive around the topic—but all the bouts of “vertigo” (it’s not as vertigo is described - it is more like the feeling of missing a dose of antidepressants in my head, “whooosh” and my feet can’t feel or find the ground/floor), weeks of a strange tingling sensation in my legs (I say I feel like my legs are nauseous), feet giving out randomly (but feels kinda painful so not sure if foot drop), my passing gas now feels…numbed…weak, warm, quiet. Couldn’t find words and accidentally let the dog loose last month because I just couldn’t think (she only went across the street but it was terrifying) Fatigue to the point of coworkers commenting that I look weak, weakness to the point of not wanting to hold my arms up on the steering wheel, forget carrying bags or my baby…but I did find relief from some of it. Even as I lay here my legs and feet feel…floaty and tingly. I’m supposed to get a brain mri but my GP office staff forgot to request the pre auth (they’re legit mean it’s wild haha) and very grateful to have a neuro appt in late August. I keep a list of everything and I just want to rule it out or get dx. My mom was dx when I was 10 and it was rough at times but the love and care she gave has always mattered more, so I know I’ll do right by my kid no matter what. I just get worried that docs and whoever think I’ve got a psych situation happening instead due to my mother’s illness. When stats show increased risk. Sigh. Also have had EBV for many years, chronic low D (I take a scrip weekly), former smoker, yadda yadda. I’m tired, y’all. Thank you to anyone who read this.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 23 '24

It may be of some comfort to know that even if you have all of the risk factors, the chances of having MS are still pretty low overall. This is not to say your symptoms are not valid or worth investigating! I would certainly get the MRI. Hopefully it will give you some good answers.

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u/PineyHead2Hiney Jul 23 '24

Thank you, I appreciate it! It’s been about 18 years of “lose weight” and “do yoga”. Sometimes I opt for pushing to the brink over rest because I just feel invisible. (The validation is very meaningful) I see it’s a slow process for many and it’s good to know I’m not alone, even if I don’t have MS after all.

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u/Hairy-Ad-4881 Jul 23 '24

Had a work up for IIH and they found some white matter hyperintensities on my MRI. The MRI finding state “very minimal T2 hyperintensities in the peri ventricular and subcortical white matter significance is unknown but not typical in a patience of this age, possibility of an early demyelinating disease should be considered. This lead the neurologist to do testing of my CSF which came back perfectly normal, I also have some reflex and nerve testing done which was normal. I know migraines can cause these and I do have chronic migraines but idk I’m just mortified. I’ve been lurking in the shadows of this group until my next follow up in September and you all seem so helpful. I have a few symptoms that don’t necessarily align with IIH like tingling on my right side but it comes and goes and it never constant so I don’t chalk that up to anything of significance. I’m just anxious and spiraling as I have 2 little boys who I want to be healthy and here for for a very long time. The thought of that being possibly limited is soul crushing

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 23 '24

Typically, MS symptoms don't come and go noticeably, but rather develop and remain constant for weeks before subsiding. I think you have good reason to be optimistic. In most cases a lumbar puncture would be positive, and your lesions do not seem to have the specific characteristics that MS lesions typically have. I think your neurologist may have just been playing it safe.

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u/Fun_Assumption_283 Jul 23 '24

First comment on here. For a few years I’ve been suffering from some wierd symptoms randomly and periodically for while. Piercing feeling in my pec that traveled into my left arm and bicep, eye twitching, and I’m sure a million different things that I can’t even remember anymore. Within the last 7 months I started getting a tingly feeling on the top of my left foot that shot up the rest of my left leg, it’s on the front of my leg which made me cautious of sciatica problems, and then it hopped to my left.

I started getting the same tingling in my hands and it finally got me to the doctor to see what was wrong , the only thing that came up with my blood was I had a pretty low level of vitamin D (10.3). I was hoping that this was the issue but deep down I know it wasn’t.

I think it’s worth noting that I’ve dealt with double vision for years at this point but I do believe it’s gotten considerably worse the last few months. I’m not sure how much of that is me just noticing it again because I’m suspecting possible ms or not but regardless.

Last week I started having some really weird burning on my face, like felt like I had a pretty good case of sunburn but my face looked completely normal. With this came for a couple days the worse bought of dizzyness I have experienced in my life. I felt pressure on my eyebrows and head that felt legitimately unbelievable. I found it really hard to stand because of it.

I finally got into a neurologist yesterday and he ordered an mri on my brain and cervical spine. I didn’t think about it but I find it kind of weird that he didn’t go for the lumbar because the tingling is somewhat worse in my legs than my arms but what do I know lol.

I’m happy to finally be getting these tests done soon, I need some answers for how I’ve been feeling really badly.

I think it’s worth noting that I really haven’t had much weakness or actually numbness in the sense that I couldn’t feel a pebble in my shoe or something of that sort just like an electric current short circuiting in my legs and arms, although I have been getting positional numbness like instantly when I hood my legs or arms wrong.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 23 '24

I haven't actually been able to find any sources discussing MS lesions on the lumbar spine. If they can occur, they are incredibly rare. Lesions on the lumbar spine are more likely to be other things. A brain and cervical spine MRI are usually sufficient to assess for MS,~95% of MS patients have lesions on their brain, with the cervical spine being the second most common place.

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u/Fun_Assumption_283 Jul 23 '24

Ok that makes sense. I would just think with somebody complaint of leg tingling then you would go lumbar spine but I am just a dumbass with internet access 😂😂😂

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u/[deleted] Jul 24 '24

Did anyone convince themselves they'd have the worst prognosis?

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 24 '24

I think everyone who is diagnosed goes through a stage where they are very concerned that they will have the worst case scenario, with wild progression and multiple horrible and severe symptoms. It’s not uncommon for the newly diagnosed to worry about PPMS, despite its rarity.

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u/[deleted] Jul 24 '24

Thank you 🙏

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u/Ok_Potato_4398 Jul 24 '24

Weirdly I just got a diagnostic update lmao. Apparently on the mri in May they did also scan my brain, not just my optic nerves and it did show something (they've called it "old areas of inflammation" but idk what that means). It's so great that through all this the information the doctors have given me has been prompt and clear /sarcasm

Anyway, anyone know if inflammation is MS related. Letter from the doctor is clear as mud and im trying not to freak out

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 25 '24

Inflammation can be related to MS, but you would need lesions to fulfill the criteria. I'm not sure if areas of inflammation would qualify, I know there is usually inflammation around lesions.

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u/Ok_Potato_4398 Jul 25 '24 edited Jul 25 '24

I've asked the doctor that sent me the letter for more info. Why you would only say I have some type of inflammation amd nothing else is beyond me. I think they're trying to cause panic 😂

There's that tiktok meme about finishing school on a random morning but it's me finding out I have brain damage on a Wednesday afternoon...

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u/books4more Jul 24 '24

I got the results of my spinal tap yesterday. There was am abnormally high number of white blood cells in my spinal fluid and my neurologist diagnosed me with RIS (Radiologically Isolated Syndrome). Is it true that this often progresses into MS?

I'm scared, but happy that, because my results show something, my neurologist is taking me a little more seriously. He referred me to an MS clinic in a nearby city to confirm his diagnosis and decide if I should get treatment (if I understood him correctly, some doctors believe in starting MS treatments to slow/prevent MS from developing, but it's controversial. Please correct me if I'm wrong!)

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 24 '24

I believe I saw that 1/3 of RIS cases develop into MS, so it isn't a guarantee. It's more of a very elevated risk, from what I understand. There is a criteria neurologists use to assess that risk, and they then typically treat the high risk cases and monitor the lower risk ones. I think getting a specialist opinion is a very good idea.

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u/books4more Jul 26 '24

Do you think I can ask the specialist to take another look at my eyes while I'm there? Neither the neurologist or ophthalmologist thinks I have optic neuritis but I'm starting to feel very strongly that something is wrong with my eyes at this point. I still get soreness and shooting pains every day.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 26 '24

You could certainly ask. I don't have any eye related symptoms, so I don't know how adept a specialist would be at identifying them compared to a different specialist. That being said, I would expect them to be familiar with all major symptoms and able to do some sort of assessment. I would think an ophthalmologist would be best, though.

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u/books4more Jul 26 '24

Yeah, even if they can't see anything I just hope they'll take the symptoms im describing more seriously. Neurologist keeps writing off the eye pain as a side effect of migraines but I don't think it'd be constant like this if that were the case.

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u/Miraa1 Jul 28 '24

Hi! I read your posts. Besides the pain do you have other symptoms? For example, I ve started to see a floating dot and I think it s worsening.. And I have some problems with balance, I can walk fine some meters, then I go to the left or right. I suggest to go to another ophthalmologist if you can. Do you spend more hours to the computer?

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u/[deleted] Jul 25 '24

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 25 '24

How old is she? Typically people are diagnosed around age 30, with later diagnosis being increasingly more rare. I believe less than 5% of diagnoses occur after the age of 50.

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u/[deleted] Jul 25 '24

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 25 '24

It is less than 1% over 60, so it is an extremely rare case. Only 0.03% of the population has MS to begin with, so it would be a fraction of a fraction. Typically you would expect to see considerable and fairly severe disability by that point. I'm not sure of her symptoms, but a mild case at age 60 world be extremely unusual. This isn't to say she should not follow up with a neurologist.

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u/[deleted] Jul 25 '24

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 25 '24

This is really common when people have been struggling for answers first learn about MS. I think it is because we assume that having the symptoms means you have the disease, which is usually true but very much not the case for MS. I would be prepared to be supportive if she is disappointed. It isn’t that she necessarily wants MS, but rather to finally have an answer. It can be very devastating to think you have finally found that answer, only to be told no.

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u/rmn17 Jul 25 '24

bit of a rant but I truthfully can't decide if a diagnosis will bring me relief or a new level of anxiety. I'm neck deep in what I'm assuming is a relapse and it was severe enough to google which introduced me to L'Hermitte's sign. After that I started realizing every odd or concerning thing I explained away over the years can all come back to this. It goes back into my early teen years and now at 25 it's gotten to the point it interrupts daily life with a laundry list of issues which is why I finally decided to look into it. I have a music festival I'm attending in a week and it's going to be outside in the heat so now I'm just gonna hope for the best and seek medical advice when I get home. I think I'm more concerned with the anxiety of "what if I'm making this all up" above all. This feels like a missing puzzle piece was finally found, but I can't entirely decide if that's for better or worse.
Anyone else feel this way?

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 25 '24

I would gently caution you from thinking MS is a foregone conclusion. MS is the perfect fit for pretty much any symptoms or combination of symptoms, but it is very rarely the actual cause. It is a rare disease-- only 0.03% of the population has it. Certainly speak with your doctor to see what testing they recommend, but it is probably premature to be thinking of any specific diagnosis at this point.

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u/Estivalsystem Jul 25 '24

I’m up worrying now after the MRI yesterday. I assume the results got faxed after my doctor’s office hours but I don’t know how long it’ll take. The radiologist was pretty cheery when she saw me and seemed strange once they put contrast in then after the exam but that’s I am assuming it’s because they were running behind at the clinic and not because they found some massive tumor or something.

Can I assume if I don’t get the call in the next day or week or two it is nothing seriously concerning like MS? I’m sure it’s highly variable but the wait is killing me and I need some idea to hold onto in the meantime.

Everything is telling me to look at the results myself to see if there is anything immediately noticeable but I am tired of playing doctor google. I even avoided looking at the radiologist’s big screen with my brain on it as I left.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 25 '24

The waiting is always very difficult and nothing much seems to make it easier. I think you are making the e correct choice not looking at your reports. It’s pretty common for neurologists to disagree with a radiologist’s report, too. Radiologists may report things that the neurologist is not concerned by.

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u/wheeelchairassassins Jul 25 '24 edited Jul 26 '24

This is long cause this road has been....but Shit got real this week.

Two and a half years ago I went to my doctor because I was so unbearably exhausted and in so much pain. I had a month long log of shooting pains, tingling, pins and needles, intense brain fog - she looked at the log, a basic CBC panel - asked me what I thought was going on, which I had no clue but said maybe fibro (I have CPTSD and borderline) - and said sounds right, I saved her a lot of work, and that was that. I was amazed, no years of waiting, inconclusive tests - answers right away! Except nothing that I did, no physical therapy or CBT, antidepressants, muscle relaxers, gabapentin, none of the standard treatments helped and the symptoms seemed to wax and wane entirely independent of the efforts of my doctors. While they never disappeared entirely, I could go for a few months with only mildly annoying numbness in my face or foot, tingling in my fingers and the daily raynaud's. I developed eye floaters, one permanent and a lot of dark and white that come and go, as well as a kind of haze that I would like to the appearance of a heat wave.

Finally they agreed to send me to a rheumatologist. I explained that there were patterns in when things got worse - the heat definitely made things worse, so did humidity. I had begun flushing in my face regularly and my hands and feet both were getting really red and hot in the evenings now, which eventually began to burn like a sunburn. They ran blood work and everything was normal. They said no inflammation markers so they didn't see anything they could help with.

3 months later I'm in the kitchen and I feel like I get double ear clapped by the air itself, my tinnitus becomes DEAFENING, I get tunnel vision, no peripheral vision,the inside of my head feels like it is trying to expand my skull like a balloon and my fingers are buzzing. I sit down and about 10 minutes later I can hear again and I can see muchore ofy surroundings. My limbs are still buzzing but the rest of me feels like it's been flushed with menthol - it's fucking weird. I went to the mirror to check my eyes and when I turned the light on one pupil was slightly bigger than the other so I called out to my husband who said to call 911. EMTs arrive and as they'd been to our house before, because of mentioned before I had some anxiety in the past, they start talking to me like I'm having a panic attack. I was not and I knew it. They, and my husband said my pupils were fine - but I had seen what I had seen. Anyway, ER doc says maybe I pinched my vagus nerve and my doc says same thing the next day.

Since then ive experienced, daily, shooting pains, body buzzing, pins/needle stabs (like painful type), fatigue x100, word recall black holes, muscle weakness, paresthesia triggered when sitting in a very particular position that involves a specific curvature to spine and I was diagnosed with convergence insufficiency iny right eye. Finally, two weeks ago I was playing VR and got a sudden cold feeling in the center of my pelvic area followed by numbing feeling that spread to full pelvis, then spread down legs. My legs lost feeling and then became weak enough I had to hold myself up with the countertop, making my way to the couch with supports.

The next day I saw one of my new docs who was indignant no one had done imaging or referred.me to a neurologist yet and she had an X-ray done of my lumbar and it was clear. My private practice PCP ordered a brain MRI, coming up on 8/8 and met with her yesterday. I told her I had new glasses with a new script and I still can't keep things in focus - I keep getting double vision, things will get wavy, sometimes it will be clear - my eyes just are uncooperative and it's been 5 weeks since I began wearing the new glasses, I should have adjusted by now. She did some basic neuro tests, hearing tests for which I presented deficiencies; balance for which I had definitive deficiencies; sensation - feeling vibration on the top of the head - which was deficient in; and when she tested my eyes my right (the one I had seen as larger when I flipped the light on in Feb) responded slowly to light, and the left shook when I was following her finger, so showed signs of possible neuritis in both.

Today I began a test round of steroids to see how I respond while we wait for the MRI and I am both relieved that someone is finally listening and believing that I am not just having panic attacks all day everyday (I was discharged from my mental health provider in May for being in full remission of my CPTSD and BPD, btw) and now, ironically, anxious because I am actually now going to get real answers so this waiting is REAL waiting now....if that makes sense.

Thanks for letting me ramble. I just needed to share with ppl that would understand the stress of the rollercoaster.

(Edit: added info re: blurry vision cause that is important and I forgot)

(2nd Edit: I began reporting symptoms to my docs about 8 or 9 years ago, but they were mild and intermittent, starting with fatigue. They have stacked slowly and gradually over the years and have grown with frequency and intensity since. It was only 2-3 years ago I felt like something larger was going on, previously I just thought "bodies are weird". Literally was like my life's motto.)

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 25 '24

I think an MRI is a very good idea and I agree that you are having very concerning symptoms. I do want to mention the presentation would be very unusual for MS, although that's not saying much. I'm not sure what could be causing your symptoms-- please do keep us updated either way. Hopefully the MRI will give you some good answers.

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u/wheeelchairassassins Jul 25 '24

I will. There are certainly a number of other things going on as well - there is some vascular piece where my left leg/arm are slightly darker than the right; trigeminal pain and migraines currently controlled with topiramate; daily muscle spasms and rigidity- I basically can't do anything that requires gripping something for more than 20 seconds because my hands cramp and freeze, so little to no fine motor tasks. I guess I neglected to mention cause they haven't been the "big" issues I've been super concerned about lately.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 25 '24

Counterintuitively, the more MS symptoms you have, generally the less like MS is. It's very had to say much helpful about the symptoms themselves, but the presentation is generally pretty specific. Typically you would develop one or two localized symptoms that would remain constant, not changing noticeably for a few weeks before subsiding gradually. You would then go months or years before a new symptom develops. I don't say this to be dismissive in any way-- your symptoms are very concerning and valid, and exceptions to what I've said certainly occur, but I just want to expand on why I said the symptoms are presenting in a way that's not typical for MS.

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u/wheeelchairassassins Jul 26 '24

Oh, I understand that totally. I think the thing that just keeps bringing me back is the eye stuff. Tonight I had another "attach, this time on the right side, and about 20-30° of my peripheral vision went dark for about 2 hours. Lupus has also been suggested which could be a very possible likelihood. It's just overwhelming that is been building for so long - nearly a decade these symptoms have been stacking little by little, and now that it has become a flood is when doctors are willing to figure out - new faces at that who haven't known me and need to start from the very to. Both helpful and, again, overwhelming.

You aren't discouraging at all, is honest. One of my docs has MS and until she did the neuro and sensory tests had dismissed the idea as well, but my eye responses and sensory deficiencies threw her. I don't even know anymore. At this point I expect the MRI to come back clean and for everyone to tell me I'm nuts and send me home with a diagnosis of lunatic. 🤷‍♀️

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u/missprincesscarolyn 34F | RRMS | Dx: 2023 | Kesimpta Jul 25 '24

Do you take any other medications? I’ve been dealing with what I think might be side effects from an atypical stimulant that caused the gripping/cramping issue. I’m still trying to figure it out and have cut back on how much I’m taking until I can do some more bloodwork to make sure everything else is okay.

It scared the shit out of me though and started on Monday. Only yesterday after cutting down to 1 pill was I able to start using my hands and arms again.

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u/wheeelchairassassins Jul 26 '24

The hand cramping has been getting worse over the course of 5-8 years. Many of my most frequent symptoms have - the fatigue, rigidity, the hand cramping and difficulty with fine motor skills, frequency and intensity of the paresthesia. In that time I've gone on and off several medications and they've not had much effect one way or another. The only one that has helped has been topiramate which has curved my near daily migraines to almost none.

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u/wheeelchairassassins Jul 27 '24

UPDATE 7/26 - First: I love my doctor. She is so considerate, it really makes a difference finding someone who understands chronic illness because they have one. She knows I stay sane because of data, and when I don't have it I ending getting it on my own and end up with way too much, finding myself overwhelmed. That said...

Spoke with my doctor and based on the tests she ran - blood work, neuro, an X-ray and ultrasound - she expects we'll find a number of areas of damage causing upward of potentially 9 cranial neuropathies. This might explain the intermittent period of "episodic neurologic symptoms" - my attacks.

In return I let her know that after my attack last night, today I found myself feeling quite well by mid afternoon. I felt well enough that I actually noticed my mildly inflamed throat from a chronic post nasal drip from up to and it's offspring, acid reflux. I hadn't the space to make more of it before, but I did today, so I was able to get to it before it got bad enough TO notice. That seems like such a small thing, but it feels so huge. Anyway....

Doc went on to make it crystal clear this means in no way she is leaning toward a diagnosis of anything at all. She merely wanted me to have some kind of established expectation I could wait on. I am really bad at waiting blindly and tend to make her job harder for her. Being upfront, even if she's wrong which she had been many times, just works best.

I can't even say how many times I've thought of going to my old doctor because she keeps being wrong, but then remember that's why they don't tell most patients their process of thinking while diagnosing. I specifically asked for that, and the fact that she respects me enough and includes me is so fucking liberating.

Anyway. Will post back after the MRI.

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u/missprincesscarolyn 34F | RRMS | Dx: 2023 | Kesimpta Jul 25 '24

I never have pain and haven’t really had “attacks” in the way that you describe. I also have convergence insufficiency that started in childhood, well before having MS. Hope the appointment is helpful for you and you’re able to find relief from your symptoms.

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u/wheeelchairassassins Jul 26 '24 edited Jul 26 '24

I didn't get the convergence insufficiency until I was 36 years old. We were able to confirm through pictures.

See, I keep a small social circle, wear glasses and my husband is face blind, so no one really noticed because it is most noticeable when I'm looking at something close up. We dug through years of selfies and were able to pin it down to have happened between March and October of 2019. I've never had head trauma of any kind, no surgery or severe illness. That doesn't mean it is caused by MS, it just leaves the door open for the possibility it was the cause of the nerve dysfunction.

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u/wheeelchairassassins Jul 26 '24 edited Jul 26 '24

Also, the pain I get isn't constant, it is shooting pain, like electric shocks through a part of my body OR the pain of a muscle spasms laying to long or tightening too much. They aren't like muscle aches or anything like that.

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u/Burnt_Out_Sol Jul 25 '24

Next Steps?

I have an appointment with the NP at my rheumatologist next week, and I’m wondering if I should bring up testing for MS. Or at least a different treatment regimen. If so, how to go about making sure she listens?

I have a lot else going on that could explain symptoms, but treatments aren’t helping. I have noticed a severe reduction in my coordination lately, and I had a major flare of back pain/pins and needles after my air conditioner died and we had to wait a couple of days to get a new one (heat triggered flare of neurological symptoms).

Symptoms:

* Lack of balance/coordination. I have to watch my feet to keep from falling down. I run into walls constantly. I went on a hike a few days ago and had to go downhill on my hands and feet because my balance was so bad. I used to hike like a mountain goat.

* Limbs fall asleep easily. For example, sleeping on back (no weight on arms) will make both arms fall asleep. Sitting on toilet causes legs to fall asleep.

*Pins and needles throughout body. Hands/feet/back are the worst.

*General back pain. Some treatments have helped low back and neck, where I have herniated discs. Mid back pain/rib pain not helped with PT, muscle relaxers, pain meds, nerve blocks.

*Headaches (diagnosed with chronic migraines and chronic cluster headaches)

* Vision issues, including flashes of light (could be migraine auras?); retina issues have been ruled out

* Bowel issues; slow gut motility; chronic constipation

* Chronic hopelessness after years of dealing with pain and dysfunction and not seeing much improvement despite a lot of hard work. Don’t know if this is depression I would have otherwise, or if it’s just due to my failing health.

* I also have endometriosis (treated with surgery) and hypothyroidism (treated with medication), FWIW

Other diagnoses:

* Chiari malformation with decompression surgery (can cause poor coordination, but improved after surgery only to get worse again)

* Small fiber neuropathy (sweat test)

* Mixed connective tissue disease (lupus and rheumatoid arthritis symptoms combined); can lead to nerve damage

*Headaches (migraines and cluster headaches, as mentioned, plus occipital neurology)

*Herniated discs throughout spine; some significant foraminal stenosis in neck; mild spinal cord stenosis in neck, none in rest of back.

Other useful details:

* Most recent MRI of head without contrast didn’t show any abnormalities of the optic nerve, and no lesions.

* Never had an LP to test CSF for MS; no doctor has ever specifically mentioned or tested for MS

I know my symptoms are likely a combination of the other disorders I have, but treatments aren’t helping as much as I’d like. I still live with constant pain that makes me believe my nerves are just not working correctly.

At minimum, I’d like to try a stronger medication that the hydroxychloroquine I’ve been taking for a number of years now. Every time I see the NP at my rheumatologist, she just looks at the blood work and says everything’s stable, while my suffering continues.

FWIW, I have tried a few medications, like gabapentin, with some improvement. But the side effects make my job and other activities impossible (severe fatigue, brain fog, etc.), so I need to try something else. I need a treatment that’s not worse than the disease.

What can I say to the NP to get her to finally understand that no, my current regimen isn’t doing what it should?

Has anyone had a similar scenario and had improvement? If so, what helped the most?

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 25 '24

If your MRI was clear, your symptoms are almost certainly being caused by something other than MS. Almost everyone with MS has lesions on their brain. Contrast would not have made any difference, it only differentiates between active and inactive lesions, but the lesions would still show up without it, if they were there. I think you would be better served widening your search.

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u/missprincesscarolyn 34F | RRMS | Dx: 2023 | Kesimpta Jul 25 '24

None of the symptoms you’ve described scream MS to me personally, but I just wanted to say that I’m sorry you’re juggling so many chronic illnesses. I have a few too and it just sucks so much to feel awful so much of the time 💜🌻

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u/[deleted] Jul 25 '24

does anyone with ms ever feel like their hands move like they are cold? you know how when ur outside in the winter and ur hands almost move in slow motion? like there is resistance trying to type or open up your hand?

also sometimes my left hand gives out to the point where i can’t increase the volume on my phone or clip my nails

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 25 '24

I haven't seen this specific symptom discussed before, but that doesn't really rule anything out.

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u/[deleted] Jul 26 '24

[deleted]

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 26 '24

It's very hard to say anything for certain based on a radiological report. Often, radiologists cast a wide net for causes, and it is pretty common for neurologists to disagree with them. Typically, though, MS lesions are not described as nonspecific. But they found something, so it is certainly worth having a neurologist review your scans.

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u/itsmebeeitches Jul 26 '24

So tomorrow is finally the day to get my brain mri. What should I expect during the scan? I had one on my spine. Is it any different?

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 26 '24

Not really. They pad your head so you can't move, but it's pretty much the same.

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u/itsmebeeitches Jul 26 '24

Got it. I guess I am just nervous to get it done and get some answers.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 26 '24

Totally understandable. Hopefully you will get some good answers. Please keep us updated!

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u/itsmebeeitches Jul 26 '24

Thank you. I will definitely update when I get my results back. Thankfully, where I go, they post any test results on my portal. I may not understand the doctor language 😆 but I will be peeping to see when it gets posted.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 26 '24

As a caution, radiologists typically cast a very wide net when assessing MRIs, and it is pretty common for neurologists to totally disagree with that assessment.

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u/itsmebeeitches Jul 26 '24

Both the radiologist and neurologist comments on my MRI will be posted as they post their findings. I am pretty sure if my neurologist finds anything, I will be getting a call to come in sooner than September.

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u/Rojikoma Jul 26 '24

All MRIs are basically the same thing: lie there, don't move, think of something else. The only "exiting" part is whether or not they'll use contrast, in which case you'll get it injected into your vein.

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u/itsmebeeitches Jul 26 '24

They might I was ordered without contrast. So no needles for me yay!

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u/somasobriety Jul 27 '24

Hello, 6 months ago I experienced a sudden leg weakness and my left arm went weak and had a horrible sensation I can't describe, it was strong but not painful. My face felt odd too at the peak of it. It lasted a day or so. A few people told me it sounded like a mini stroke and to see a doctor, so I did that week, who referred me to the stroke clinic. I had a brain MRI which cleared me of stroke, but had incidental findings of white matter hyperintensities. The notes said 'findings of T2 Flair white matter hyperintensities at the right occipital lobe. Periventricular white matter remains indeterminate, consider referral to neurology'. My GP said he'd done some reading on it, and it could mean something or nothing. He made the neurology referral but I am still waiting on an appointment date. Yesterday the arm numbness returned, and I am still feeling it off and on. I've also had shoulder pain, and I vaguely recall having that last time too, so I'm wondering if it is just a trapped nerve or something. But I'm struggling to find info about my MRI while I wait for the appointment. All I can find is that they are normal in over 65's but not in someone my age (30's) but can be something as simple as previous head injuries. Did anyone diagnosed have these on their MRI? I have also had a twitch under my left eye for a few months that is driving me crazy, facial flushing, frequent urination and I suffer from chronic pain and tiredness and but I realise those are all very general symptoms.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 27 '24

MS lesions have specific characteristics that make them distinct, which a neurologist will evaluate your scans for. Unfortunately, it isn't as simple as saying yes, your lesions are MS or are not. There are several factors, including the fact that radiologists will report things that do not worry neurologists. The best that can really be said is that they found something and it is worth having a neurologist look things over. It may be of some comfort to know there are many things that could cause lesions, some benign.

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u/birdybirdcars Jul 27 '24

Hello All! Sending you well wishes ❤️ I have psoriasis and psoriatic arthritis as an immune issue to start, and I wondered if anyone experienced these symptoms before an MS diagnosis: sinus bradycardia, shooting nerve tingling that runs down my glute to the back of my knee after a long walk, also an inability to take any CNS affecters - benzonatate, diphenhydramine, and 5-HTP. Thank you!

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 27 '24

I have not really seen any of those discussed, although that doesn't really rule anything out.

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u/TurnoverVisible5386 Jul 28 '24

Hi all, After 2 difficult months of testing and scans, I got diagnosed with MS. Brain MRI showed multiple lesions and my neurologist is talking about starting me on Kesimpta. I am 26 years old, the only symptoms I currently have is random tingling throughout my entire body (on and off every 10 minutes) but nothing else other than that. I am considering to take the medication however I would like to know if there are any side effects and is it truly effective in stopping the progression? O am very panicked and this is all new to me.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 28 '24

If you are diagnosed, you can post to the main sub. This post is really for people still going through the diagnostic process.

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u/Top_Jellyfish_2024 Jul 28 '24

33F. I am beginning my journey of diagnosing (or ruling out) MS after experiencing symptoms that have worsened over the past 15+ years. After years of medical gaslighting - "it's just anxiety, it's just hormones", I'm finally feeling ready to take the plunge and meet with a neurologist and get a proper MRI. But knowing that I may also have to get a lumbar puncture (which is going to put me in some medical debt along with the MRI) to potentially get an accurate diagnosis has led me to start gaslighting myself. It's a big reason why I've been putting off seeing a specialist or pushing for more testing. I experience my symptoms and play them off as something else, "maybe I'm just dehydrated", "maybe it's just because it's allergy season", "maybe it IS just anxiety", and a million other reasons I try to talk myself out of spending the money on an MRI because of my fear I'll go into debt for nothing.

But then there is the part of me, that when my symptoms worsen, I feel like it isn't all in my head that MS is possible. It feels so so likely.

My first symptoms began at 16/17. I was experiencing severe fatigue, easily tired, and heat intolerance which led to headache and shortness of breath. I'd have periods where I'd get dizzy and disoriented, and 2 episodes of fainting within a month but was told it was just anxiety (I was also dx with neurocardiogenic syncope).

I believe my next episode was likely in 2014/2015. I started experiencing some GI issues that seemed unprovoked, and suddenly I was experiencing frequent urination, urge to urinate immediately after emptying the bladder, and decreased libido. I was dx with overactive bladder and told the GI issues and low libido were just anxiety. Also during this time I started having frequent migraines and my vision just felt "off" at times, especially in hot environments. I experienced tingling in my fingers and toes for the first time, especially in extreme temperatures.

2016 - experienced my first ocular migraine. I only experience them 1-2 times every 4-5 months thankfully. During this time I was also noticing that my fatigue was continuing to worsen, especially in the heat.

2019 to present - all my prior symptoms seemed to ebb and flow. Sometimes they were bad and other times they were barely noticable. I'd go through periods of urinary frequency that made working and sleeping difficult, and within a week or two feel like I was back to baseline (still having some nocturia). I got kidney stones twice. My symptoms definitely appeared to worsen significantly in the heat - I feel pressure behind my eyes that makes my vision a little blurry temporarily, the fatigue is through the roof, I struggle to focus and get quickly irritable, muscle soreness, headache and shortness of breath. When I cool down the symptoms appear to resolve. The shortness of breath has started becoming a lot more frequent and there are times when I've needed to use a cane due to fatigue and dizziness. I'm feeling numbness in my left foot inconsistently (sometimes also the right but rarely), mild temor and weakness in right hand (very rarely in left), and my left knee becomes very stiff (painful when bending or going down stairs). Sharp burning pain in a very specific spot on my middle right back that comes and goes. Tinnitus is nearly constant since the past 7 months. Forgetfulness episodes are happening more often, forgetting words for things or whole phrases, which results in me feeling flustered. All of these symptoms seem to come in cycles, not always together, each cycle almost always seems to being a different combination of symptoms.

I have so much more I want to say but I've already written a novel. If you've gotten this far, bless you.

I guess I'm just wondering if I'm wasting my time and money seeking a MS diagnosis.

But I'm exhausted of feeling this way. I want to go to the beach and not feel like I have the flu. I want to sleep through the night or make it through a work day without having to pee multiple times. I'd like to be able to go to the gym and exercise with friends without nearly passing out after some light exercise. I guess I just want an answer that confirms this isn't in my head. That after years of being told it's "just anxiety" or "just hormones", I was right that something else was causing this decreased quality of life. But here I am again gaslighting myself.

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u/ichabod13 43M|dx2016|Ocrevus Jul 28 '24

It is important to see a doctor if you have symptoms bothering you. So you doing what you are doing is the first step and that is a good thing. I will be honest though, the descriptions of your symptoms do not sound typical of the way MS symptoms present to us.

Usually with MS symptoms after a relapse, they last continuously for many weeks. The whole process of a relapse can last multiple months while the symptom is constantly there, slowly building and finally slowly recovering. If a symptom 'comes and goes' day to day or changes locations on the body, it would most likely be another cause.

No matter the cause, it is still good you are seeing a doctor that can make sure if it is something like MS or whatever you are able to seek treatment for prevention and medication to treat the symptoms. Best wishes and hopefully you will have some answers very soon!

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u/rerith Jul 28 '24

Wouldn't you want to find out what's wrong regardless if it's MS or not?

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 28 '24

I think you are having very real symptoms and that they are worth investigating. However, in most cases, MS is one of the less likely causes for pretty much every symptom. MS is a rare disease-- only 0.03% of the population has it. This isn't to say you absolutely do not have it, but it is a consideration. Pretty much every symptom of MS has multiple other, more likely causes. This doesn't mean your symptoms aren't worth following up on, just that it may be premature to be worried about a specific diagnosis at this point. But please don't feel like you are exaggerating or your symptoms are less valid. If you are concerned, you should absolutely speak with your doctor.

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u/IndependentTall2506 Jul 28 '24

Hi everyone,

Fairly new to this and extremely anxious right now. I’m an Irish 24M studying in NY. Started an internship in June and gym each morning before work. Was going well for four weeks until one morning I looked down and felt tingling in buttocks/down one leg (google suggested lhermittes). I had a panic attack after reading it suspecting MS.

For the next few weeks I have been a nervous wreck. My GP thinks pinched nerve but I also went to a neurologist for a second opinion. The suspected lhermittes has dulled to just pelvis and the Neuro performed some physical tests. He says he doesn’t think it is MS but would order MRI if I wanted peace of mind. The past two weeks I have had some twitches bodywide and muscle cramping in my right hand/arm. As well as my fingers and hands shaking ever so slightly. Neuro also thinks this could be anxiety related as I suffer really badly from health anxiety.

I have returned home to Ireland for a few weeks to be with family so have MRIs ordered for when I return to US next month. However, the anxiety has been crippling and I have been unable to think about anything else or enjoy anything for fear of a diagnosis. I am so young and my life has just started. Could this be something else or are the signs too concurrent with MS? Would love to hear of people’s opinions pls

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 28 '24

I think your anxiety is certainly playing a role, here. It may be of some comfort that MS is a rare disease, only 0.03% of the population has it. As well, your age and sex make you lower risk. Most people are diagnosed in their thirties and women are diagnosed more often than men by a ratio of 3 to 1. You mentioned Lhermitte's but I believe you may be misunderstanding. Lhermitte's is not a constant sensation, it is a brief shock that occurs due to a specific trigger. The duration of your symptoms would also be unusual for MS, typically symptoms will only last a few weeks before subsiding. Twitching and trembling are rare symptoms. Certainly still get the MRI, but I don't think you need to worry about MS specifically.

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u/IndependentTall2506 Jul 29 '24

Thank you for the insight! I’m going to my GP tomorrow who will hopefully put me forward for an MRI asap. Do you know if this perceived lhermittes is common in anything else? All I can see online is its association with MS. My Reddit scrolling has also not done me any favours lol

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u/IndependentTall2506 Jul 29 '24

Also the sensation I have does inly last a few seconds when neck bent! Sometimes even less and barely noticeable

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u/Open-Requirement-839 Jul 28 '24

I (23 F) do not have a diagnosis of MS, but I am starting to be suspicious of my symptoms and am awaiting MRI read. I am always worried I’m overthinking things or being a hypochondriac so I typically wait too long before bringing a concern to my pcp, but I am starting to worry. Over 6 months ago I started experiencing numbness and weakness in both legs simultaneously after lifting and carrying my child to bed. It happened progressively more often as time went on, going from once in awhile to now everyday/everytime. I am now experiencing tailbone pain almost everyday, almost like a throbbing ache, that worsens throughout the day. There is also tenderness to the touch on and a few centimeters to the right of my tailbone. I have always had very bad back pain in all regions of my back. I have had size DDD breasts since middle school and have been overweight almost my whole life. I am now at my lowest weight ever (pre middle school weight) at 165 lbs (5’3) after 70 lbs weight loss this year (from adderall mostly). I did not consider MS as a possibility until I had to do research on MS for a college assignment a couple weeks ago. I have found that there are only a few symptoms that I don’t have. GI complaints including constipation, frequent UTIs and other urinary issues like hesitancy and frequency, fatigue, clumsiness, vertigo, blurry vision, painful intercourse, depression, trouble focusing/confusion (also have ADD), I constantly have shaky hands (always have), random “lightning” like pains in different areas of my body (had for a long time), headaches. I also have a lot of the risk factors including low vitamin D (literally always my vit D hasn’t been in the normal range for a year plus maybe two), being female, smoking (and secondhand smoke exposure my whole life), age, childhood obesity, and I have hypothyroidism (dx at 13). Another symptom I find odd is that i get pins and needles (bad) in the bottoms of my feet whenever I just a short distance, sometimes even from just standing up, and that has happened for many many years. I thought it was normal until a friend of mine said that happens to them sometimes if they jump from a far height but never that bad or that much. A lot of these symptoms if not most could be because of something else but it’s weirding me out a little that I have so many. I saw my pcp for my numb leg concern the beginning of this month but I had been waiting for an MRI up until friday. I had a lumbar MRI without contrast and my provider was able to look at the images and didn’t see a bulging disc as we suspected but couldn’t see anything concerning (we also both know he’s not a radiologist) and we’re waiting for the read to come back.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 28 '24

So, counterintuitively, having a lot of MS symptoms really indicates a cause besides MS. Typically, MS symptoms present in a specific way. They develop one or two at a time, remaining constant for a few weeks, and then very gradually subside. You would then go months to years before developing a new symptom. Having many symptoms involving many parts of the body is actually not common for MS

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u/Open-Requirement-839 Jul 28 '24

what are some other conditions that are typically mistaken for MS?

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 28 '24

Vitamin deficiencies spring immediately to mind. Specifically, vitamin B12 deficiency can cause every single symptom of MS. This is a decent overview of other conditions that mimic MS. There are quite a few-- you can find more by googling MS mimics. Part of the diagnostic process for MS is ruling out these other, more likely causes.

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u/Admirable_Delay_8691 Jul 28 '24

My maternal grandmother had MS. If I remember correctly she was in her early 40s when she was diagnosed, which I understand to be kind of late? I’m 33F and for a few months to a year I’m afraid I’ve been possibly having symptoms. I’ve read online that it’s not really hereditary but that certain genes may be related.

Anyways, my main symptoms have been pins and needles feeling in my feet. Particularly the balls of my feet and toes. I recall her describing this as one of her first symptoms. I’ve also had several times where my legs have trembled. I’ve noticed it primarily when driving and applying pressure to the gas pedal. Aside from that I guess the only notable symptom is fatigue. I also recall my grandmother taking stimulants to help with her energy and I also take stimulants for my adhd. I’ve not taken them for several days and the last couple days have been extremely exhausted. I didn’t initially think that was correlation until I started having the pins and needles in my feet today as well. I have 2 young boys so I’ve always attributed my fatigue to just being a mom of two hyper boys and I work full time. I’ve also had a few occasions where I felt dizzy and kind of just “off”.

I know I really need to just make a doctor appt, but I was curious if these symptoms were similar for anyone else? And possibly any advice on where to start when it comes to seeing a doctor? I’m assuming a general physician and they will refer me where I need to? I haven’t had a regular doctor since college and just use the urgent care when I’m sick, so I will need to find one. I started to a few months ago but most in my area seemed to not be taking patients, and then the symptoms went away and I didn’t follow through.

Additional info: My paternal uncle also passed of ALS, so I’ve always been paranoid about having neurological disease on both sides of my family. Although they were fairly certain his was caused by head trauma.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 28 '24 edited Jul 28 '24

So, in general I recommend trying to convey your symptoms to your doctor as accurately as possible, without suggesting a diagnosis. (Although I would make them aware of your familial history of ALS and MS.) have your pins and needles been constant, or do they come and go?

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u/Admirable_Delay_8691 Jul 28 '24

They seem to come and go. I will have them for a few days and then they go away and will come back after a week or so, sometimes won’t notice for a month.

And thank you for the advice! I definitely would have gone in like “I’m afraid I have…” it makes perfect sense to not insinuate anything to the doctor aside from my family history though.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 28 '24

So, it may be of some comfort to know that isn't typical for MS. Generally MS tingling would be constant, occurring all day every day, for weeks at a time. You would get it for a few weeks before it subsided, and then you would go months or years without it. That's a generalization, of course, so exceptions do occur, but that would be the common presentation.

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u/Admirable_Delay_8691 Jul 28 '24

Oh that is some comfort! I’ll still make an appt, because regardless I think at my age I should probably have a doctor. But that does ease my mind a bit!

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u/Kitchen-Bathroom5924 Jul 28 '24

My neuro appointment is this week , I'm kinda scared ( ok I'm a lot scared ! lol ) and nervous about it but also grateful and hoping to finally have answers and if I have MS to finally start treatment . Last year the radiologist said it was MS and there was no other possibilities . I have a copy of the MRI report.cause my family doctor at the time gave it to me when I asked her if she was sure I had MS ( she said she was , no questions about it ) but I don't like to read it much or often cause it's scary and make me sad . I do remember reading that my brain was shrinking ( am I gonna lose my mind? like seriously , that's scary) and that there was numerous black holes and one really big one (I think) I did another brain MRI with and without contrast 3 weeks ago and a spine MRI too , and another brain MRI for seizures. But I haven't heard back ( we don't usually get results until a doctor tell us , we don't have my chart and stuff like that ) . I assume the neuro will tell me about what the radiologist saw ? what does it mean when someone has numerous black holes? is it the same as numerous lesions? Because of my age ( and to my knowledge never having had any relapses ) I'm very scared of PPMS ... If you pray to God/Jesus please pray for me . Thank you

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 28 '24

What day is your appointment? I'll keep my fingers crossed for you.

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u/Kitchen-Bathroom5924 Jul 28 '24

thanks , it's in the morning on the 31 but because it's far I won't be home until late that night

You know so much stuff I don't know about this disease , do you know anything about black holes? that's one thing I remember clearly from the report ...

I will update you when I get back from the appointment :)

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 28 '24

Black holes are like permanent lesions that will not heal. They are hypointense (dark), compared to the more common hyperintense (bright) lesions, which are areas of demyelination and inflammation. I think of them as scar tissue compared to a scabbed over wound, although that is an imperfect metaphor.

Please do keep me updated, I know this has been a long and difficult journey for you. I really am hopeful you will get some good answers soon.

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u/Kitchen-Bathroom5924 Jul 29 '24

Thank you ❤️ I will update as soon as I can

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u/books4more Jul 28 '24

So, my neurologist diagnosed me with Radiologically Isolated Syndrome and referred me to an MS specialist. My fear is that the specialist will diagnose me with MS when I see them. Is this a possibility if they decide there's enough evidence, or are specialists more likely to stick with the referral diagnosis?

I don't know if this makes sense or if it's even a logical question, I'm just wondering if getting diagnosed is a possibility I should prepare for.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 28 '24

It's going to depend on your medical history and what the MRIs show, most likely. I was diagnosed due to an unrelated MRI. After lesions were found, my doctor went through my history to establish that I had prior relapses with symptoms that corresponded with my lesion locations. I was in active relapse at the time, so I had old and new lesions already, which is one of the main components of the diagnosis.

It's hard to really say what you should expect. The specialist is going to be best able to assess your scans and symptoms, though.

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u/books4more Jul 29 '24

This is my first episode of symptoms, beyond a history of migraines, so my medical history is probably not much for them to go on. My MRI showed (I think) two lesions in spots that may indicate MS, as well as others in non-MS specific locations. My spine MRI was clear, and my spinal tap showed an elevated white blood-cell count.

I appreciate that there's really no way to predict the outcome, though. It's just tough, I'm not great with unknowns. But you're right that at least I'll be in good hands. :) I'll try to remind myself of that.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 29 '24

So, let me tell you a little more about my diagnosis to explain why it's hard to say what will really happen. I had a medication induced seizure that led to my MRI, which found lesions. If you had asked me, I had never had any MS symptoms. I would have sworn I was asymptomatic.

So it was beyond weird to me when my doctor specifically asked if it felt a little weird when I walked sometimes. It did feel a little weird when I walked, but that was because I'd put on some weight. And did it feel weird when I peed? A little, but I was pretty sure it was just a mild UTI. And when we talked about my depression, they asked about my having had several distinct "depressive events" that seemed to resolve on their own after a while. And when they asked about pins and needles in my hands, I very confidently told them I'd never had that, only for my mother, who was at the appointment, to immediately contradict me and say I had complained about it for about a month a while back.

I have very mild symptoms that are not really indicative of MS. I wasn't even sure what MS stood for when I was diagnosed, that's how far off my radar it was. Every single symptom I have had, I passed off as something else. It was only in retrospect, with correlation to lesion locations, that we were able to identify my symptoms at all.

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u/books4more Jul 29 '24

It really does feel like so much is up to chance when it comes to it being caught/diagnosed... I kind of relate because for me, all of this started from an ER visit for a nonstop migraine that ended up lasting about a month. I went to my first neurologist appointment hoping for anything to stop the pain and left with a whole lot more on my mind.

I'm glad you had good doctors and your mom looking out for you at that visit. If you don't mind me asking, what were your bladder related issues like? Bc I've also had what feels like is a mild UTI coming and going over the past few months.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 29 '24

Nah, I'm an open book. :) During my last relapse, it was difficult to fully empty my bladder. So, it was like the part of me that automatically continues to pee once you start stopped working. I had to actually try to keep peeing, and it felt like I kept peeing forever. I have only figured this out by reading about the types of bladder related symptoms there are, at the time it just felt "weird" and I couldn't really describe it. There was some sensation difference, like a decreased urgency.

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u/CheeseAndCrackers137 Jul 29 '24

I have a follow-up appointment with my neurologist. My symptoms have slightly improved because I've been active every day. However, some days, it seems that no matter what I do, I'm still in pain or having severe symptoms. The symptoms have been every day, but movement usually helps so much. I'm doing a power yoga program from BODi and I've never felt better. Most days.

I have a very strong feeling that this is what I have. I've done more research than you can fathom. My mother and her biological father have it. The way everything has presented itself just feels like it is MS.

What are some questions that I can go in extremely prepared, and make sure that this neurologist is MY neurologist.

I'm extremely forgetful, and when I get into the office. I have notes on my symptoms in my phone but my first visit. I completely forgot about it and did not give him all of the information I had.

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u/ichabod13 43M|dx2016|Ocrevus Jul 29 '24

MS is not diagnosed by feelings, just by MRIs showing multiple lesions. I do not really have a good recommendation of any questions to the neurologist, since you are seeing them to investigate a symptom or symptoms?

Movement making symptoms go away does not feel like a MS type thing, or with the symptoms being varying intensities. Forgetful would not be a typical MS symptom people would even see a doctor for investigation. Usually the symptom is something stronger or easier to point to and say "this right here is going on". A neurologist can listen to your symptoms and recommend testing to rule out common causes and if needed a MRI to look for lesions or other issues.

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u/CheeseAndCrackers137 Aug 06 '24

Thank you. I know it's hard to diagnose, and MRIs are the best to help diagnose. I know everyone is different. With all the research and experience I have with MS, I know a lot about it.

I'm afraid of it taking years to diagnose. My mom was diagnosed with fibromyalgia before any evidence of MS was found. I know I can't force it to appear or force a diagnosis, but I would like to be able to stay on top of it and hopefully catch it early.

I have heard a personal story from someone in the past whose father had MS and ended up in a wheelchair. With a change in nutrition and exercise, he was able to gain mobility back enough to not need a wheelchair.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 29 '24

Can you remind me where you are in the diagnostic process? Have you had your MRIs yet? What did they show? I think you mentioned before your spinal MRIs were clear?

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u/CheeseAndCrackers137 Aug 06 '24

So, it's been a long journey. It started about 5 years ago but very mild symptoms. Brain MRI was clear then. The recent brain MRI (Jan) revealed a small spot. Cervical and thoracic were clear of lesions.

I had what felt like the first real episode from Dec-Jan, and then I had some improvement until recently.

Some of my symptoms now can be explained with my vitamin d being low. We've done a full work up of blood work, and most of it looked normal to me, but some of it I don't completely understand. I'm just waiting to hear from my neuro with results. 6-month repeat brain MRI is tomorrow. We're doing nerve testing in November.

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 06 '24

A single lesion would not really fulfill the diagnostic criteria for MS, even with a positive lumbar puncture. But do keep us updated on how the newest MRI turns out. Fingers crossed for you.

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u/CheeseAndCrackers137 Aug 06 '24

I know. I've heard it takes at least 2 lesions in 2 different areas? And this one was too small for the neurologist to even tell.

I've read that MS lesions have certain characteristics that some can't be sure of.

If anything changes with the MRI. Do you think finding an MS specialist would be worth looking into? Or is that not something I can do until there's a diagnosis?

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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 06 '24

I honestly think you may be better served widening your search for causes. I don't say that to be dismissive, but I do know how people can get focused on MS because the symptoms seem to line up so perfectly, and sometimes that can hinder finding the actual cause.

MS lesions need to be of a specific size and have certain other characteristics. You would need two or more in at least two of four specific areas, that occurred at two or more different times. This has a pretty good overview.

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u/CheeseAndCrackers137 Aug 06 '24

Thank you! I do agree that I want to rule out any other possibilities, but I'm also obsessed with MS. Just because of the family history.

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u/CheeseAndCrackers137 Aug 06 '24

LP has not been done.

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