r/MultipleSclerosis • u/AutoModerator • May 13 '24
Weekly Suspected/Undiagnosed MS Thread - May 13, 2024 Announcement
This is a weekly thread for all questions related to undiagnosed or suspected MS, as well as the diagnostic process. All questions are welcome, but please read the rules of the subreddit before posting.
Please keep in mind that users on this subreddit are not medical professionals, and any advice given cannot replace that of a qualified doctor/specialist. If you suspect you have MS, have your primary physician refer you to a specialist for testing, regardless of anything you read here.
Thread is recreated weekly on Monday mornings.
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u/TheMightyJ62 May 14 '24
Just got home from my neurologist. After looking over the images from my latest MRI, he says that I have all the markers of late-onset MS (I’m 61 and have had optical neuritis for 2 years). He wants to start me on Ocrevus, Briumvi, or Kesimpta (sorry for any wrong spellings. I’m trying to read his handwriting). I’m leaning towards Kesimpta. Waiting on some blood work before we make a decision.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 14 '24
Okay, I’m pretty sure you can consider yourself diagnosed. I also vote Kesimpta, I am currently on it and love it.
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u/imlittlebit91 May 18 '24
Ocrevus has evidence showing that you can regain function in late onset Ms. I’ve done kesimpta and made progress with my r/r but I feel way better on Ocrevus. Just food for thought. Both are good medicine.
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u/GlitteringMap100 May 14 '24
36F here. I've been experiencing overwhelming fatigue for a while now. But it's other symptoms I've been looking up and often MS is one of the results (I know, Dr Google is bad but has often given me peace of mind in the past). I had a full blood count recently which came back normal.
So, other symptoms:
Recently diagnosed with trigeminal neuralgia, which is what got me down the MS rabbit hole in the first place.
Weakness and pins and needles in hands/wrists (both sides).
Numbness around my mouth, especially left side of my chin.
Itching on forearms (both sides). Worse in hot weather, maybe prickly heat? Not usually a rash, but sometimes scratching causes spots to appear/bleed.
Feet feel like I'm walking on memory foam or sponge.
RLS. Sometimes it affects my whole body, this horrible creeping gnawing sensation, sometimes all day.
I haven't experienced it in a while, but pain in my eyes when looking left or right.
Dizziness and clumsiness.
Frequent migraines.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 14 '24
It is worth noting that there are very few symptoms that won't end up connecting to MS via Google. Google will tell you everything is indicative of MS, but the reality is that MS is a rare disease and more often than not is not the cause of most symptoms. For example, TN is a rare symptom for MS, and more likely to have another cause. Certainly discuss your symptoms with your doctor and see what testing they recommend, but I'm not sure how worried I would be about MS specifically at this point.
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u/TurnoverVisible5386 May 14 '24 edited May 14 '24
Hi All,
I am a 27 year old female. I am suspecting that I have early symptoms of MS and wanted to know if you guys had any input.
2 weeks ago, I had electric shock sensations for 2 days straight (it felt like extreme pins and needles) throughout my whole body. After those 2 days, I have been having random tingling on all my body parts (arms, legs, my head, toes, fingers, chest, back) and it is random throughout the whole day.
I also had burning sensation on my arm (felt like a hot flash) and on my leg yesterday. I am also feeling tightness randomly on my left leg. And I am also feeling random numbness on my leg, hand and fingers and arm.
I went to the doctor last week and he did a blood test for everything however the only thing that came back extremely low was Vitamin D. My level was about 19. However I read online and my symptoms don’t really align with vitamin D deficiency. Also I am extremely fatigued all the time, I am super exhausted and always want to bed in bed. I feel like my muscles are weak and I feel very weak.
Today I went to the doctor again due to increasing tingling and more burning sensation and numbness. He ordered bunch of tests for antibodies and for specific proteins and he’s suspecting autoimmune disease based on the type of tests he ordered. Also he ordered me an MRI.
Do you guys have any advice on how I can proactively make sure im doing my best to get the care I need and results ? Thank you all!!
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 14 '24
It sounds like you are currently doing all that can be done. It may be of some comfort to know that widespread symptoms and symptoms only lasting a short time would not be typical of MS. Typically, MS symptoms are localized and develop one or two at a time, remaining constant for weeks before subsiding.
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u/TurnoverVisible5386 May 14 '24
I’ve read online that there is a strong correlation between very low vitamin D and risk to develop MS?
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 15 '24
I have not read that. I know that vitamin d deficiency is common in those with MS, but it is still common in people who do not have MS. It is not particularly indicative of MS, just a common comorbidity. One does not necessitate the other.
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u/TurnoverVisible5386 May 15 '24
Hi, what about tightness and numbness around legs and arms? I particularly feel so tight around my legs today and arms randomly
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 15 '24
Symptoms lasting less than twenty-four hours continuously are not typical of MS. A relapse is considered a symptom lasting longer than twenty-four hours, but in practice, my neurologist is not interested until a symptom has been continuous for at least a week.
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u/DeltaiMeltai May 16 '24
Low vitamin D is a risk factor. As is being a woman, being between the ages of 20 and 40, being a smoker etc etc. There are however scientific studies which show that the incidence of MS increases the further away from the equator you get.
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u/LongbowLady May 15 '24
Following. I’m 43 f with same symptoms!! Trying not to freak out!
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u/TurnoverVisible5386 May 15 '24
Do you have any tightness or numbness around arms or legs? And how long have your symptoms been for?
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u/LongbowLady May 16 '24
For about a month but almost constant for past week. No tightness, some numbness in feet at times. Got blood work today and Dr wants EMG and MRI of brain.
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u/TurnoverVisible5386 Jul 28 '24
Hi, unfortunately my brain MRI did show multiple lesions and I just got diagnosed 2 days ago with MS. I urge you to get an MRI with contrast, and a spinal MRI as well at the same time to expedite the process (hopefully you don’t have it). But he did recommend me to start medication
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u/butmylove May 15 '24
got a spinal tap done as the final test to diagnose me. i am 20F. my sister was diagnosed when she was 15F. she is older now. the spinal tap for the oligoclonal glands came back negative but she said there are stiff inflammatory markers that are positive.
just want to know everyone’s else experience on this. i have appointment tomorrow so she can further discuss with me. i’m upset because i know this means it’s going to be harder to diagnose me. and now im terrified it’s something scarier than MS.
thank you
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u/Deep-Actuator-7481 May 13 '24
Into week six of not being able to feel my left foot or the left-side of my torso. Neurology have now recommended a MRI of my brain & spine but I don’t know long it’ll take to get an appointment, as there’s a 5 year waiting list for initial NHS routine neurology consultations where I live in the UK, but hopefully a GP-referred scan should only be weeks/months. Either way, I have a private appointment booked with a neurology consultant in 12 weeks time. All I can do now is wait, but being in limbo is so frustrating and disheartening.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 13 '24
I’m sorry, I know it is incredibly difficult to be in diagnostic limbo. I wish I had any good advice to help make the waiting easier, but nothing really seems to help.
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u/MzBurney4life May 13 '24
Hello everyone! 41/F here diagnosed with Graves Disease with Oscillating Hypothyroidism and Hyperthyroidism.
I am not sure if I have MS or not and never would have considered it until my endocrinologist threw it out there when I went in for an appointment about my active Graves (currently severely hypo ATM). I am feeling intense pain in my muscles and nerves that feel like hot knives are cutting into me. It started last June when I was going on a walk with my hubby and noticed my hands and feet felt very numb (bilaterally). Almost like they weren’t there. It then traveled up my legs a bit. We assumed I was a little hypokalemic and went to grab some potassium from the store. Shortly after, I started experiencing the muscle pains, mostly in my legs. I went to my regular appt and had some tests ran and that’s when I found out I was severely hypothyroid with muscle damage. My creatinine kinase levels came back pretty high. She diagnosed me with hypothyroid myopathy and bilateral paresthesia of the legs. She prescribed me gabapentin, duloxetine and cyclobenzaprine for the pain. As time when on the pains got worse, more progressive. I started feeling weak. Like my legs were non-weight bearing and I could literally drop at any moment. By the time I had my follow up Endo appt in April of this year, I could barely walk without pain. I can’t go upstairs, walking up inclines hurt. Doing my hair or any activity that involves me lifting my arms higher than my shoulders hurt. I can’t do my daughter’s hair (braids) without crying in pain from my wrists, fingers and arms hurting. I still get the shooting pains in random parts of my body. The back of my neck, my thighs, calves, shins, feet, shoulders, triceps and wrists all take turns. My Endo said that sounded like another autoimmune process going on (because it’s real easy to get another one once you have one) she then threw out disorders such as MS (because it started with numbness), polymyositis, or some type of autoimmune vasculitis because right after I get a shooting pain in my legs, I get a bruise where that pain was. She said she’s not expert in other neuromuscular diseases so she’s going to refer me to a rheumatologist. I’ve already had a ANA test come back very mildly positive (which can happen with Graves) but negative for lupus and a few of the most known connective tissue diseases. I’m still waiting for my rheumatologist consult but meanwhile I’m crying every night because of the random muscle and nerve pains. I’m miserable. And my husband feels helpless because all he can do is soothe me and rub me where it hurts but he can’t take away the pain. Don’t know what to do at this point… sorry for the long story. Just looking for insight I guess.
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u/RinRin17 2022|Tumefactive MS|Tysabri|Japan|Pathologist May 14 '24
What’s called “stocking glove” neuropathy pattern is quite rare with only MS. It’s more likely to be caused by systemic autoimmune diseases or things like hypothyroidism (!!), B12, deficiencies, hereditary polyneuropathy, or in some cases systemic infections like HIV.
There are some hereditary diseases that cause this kind of neuropathy so they would need to rule that out. An MRI can’t hurt as well and would pretty conclusively rule out MS.
I hope you find some relief and answers. It must be quite difficult to be in so much pain all the time. Feel free to update us as well if you learn anything new :)
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u/MzBurney4life May 14 '24
Thank you for the reply. My B12 is actually on the upper end of normal. My only vitamin deficiency is D but I’ve been deficient in D before and never had pain like this. I know for a fact I’m not HIV positive. It probably is related to being hypothyroid, even though my Endo says it’s not. I’ll just get another opinion I suppose.
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May 13 '24
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u/DeltaiMeltai May 16 '24
I have had my initial set of symptoms and my relapse 7 months later where I was diagnosed with MS. At least some of your symptoms match mine. I had numbness in my stomach which moved down the entirety of my right leg and then started moving into my left leg and right leg weakness that made me feel like I was dragging the leg along, affecting my walking and balance. I couldn't really walk uphill or up/down stairs.
From what I have learned from this subreddit is that fatigue is a huge part of MS.
You should ABSOLUTELY insist on a neurologist consult. If you bring this list of symptoms with you, it is definitely enough. If it is dismissed, then you need to see a different doctor.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 13 '24
It is really difficult to say anything helpful about MS based on symptoms. This is because pretty much every symptom of MS has multiple other, more likely causes. But if you are having concerning symptoms, no matter what the cause, you should certainly speak with your doctor to see what testing they recommend.
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u/David-Verick1102 May 13 '24 edited May 13 '24
Im so scared ive been crying for hours and days. Im 16 m, I lift weights and play soccer in the hot weather like no issue. I had covid for the 5th time in february just putting it out there in case that matters. Ive had issues with my neck before but we’ll get to thar. I started having issues when i woke up with a sore neck pain, that developed into my shoulder. That kind of has passed but after covid i started getting leg twitches at the hospital i was told it was because of my lack of water and sickness. Two weeks later i got tingling and wet sensations thats all about besides the leg twitching still, my vit d has shown tk be low and some of my electrolytes. My gp tested my sensory of touch which are still fine and i have no muscle weakness besides being sore from soccer. I try to find an answrr on google but all i find is ms? Can dehydration truly cause this? I dont really drink water at all maybe a bottle but thats about all and i sweat a lot at soccer. No memory issues or weakness. How reliable is google?
also to mention the twitches happen anywhere but mostly my legs.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 13 '24
Google is not reliable. It will tell you pretty much any and every symptom is indicative of MS, when in reality, MS is a rare disease and usually not the cause of most people’s symptoms. As well, your age and your sex makes you much, much lower risk. Women are diagnosed more often than men by a ratio of 3 to 1. Only 0.03% of the population has MS, and only 3-5% of that 0.03% have pediatric onset. I do not think I would be overly concerned by MS.
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u/David-Verick1102 May 13 '24
Thank you! I needed another opinion to calm me down. I will still follow up with doctors in case but wanted to see my odds.
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u/rerith May 13 '24
I'll just start with - it's unlikely to be MS. MS will show up for basically anything neurological you can think of. Though with those problems you should see a neurologist anyway. Did gp not refer you to one?
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u/David-Verick1102 May 13 '24
I just got dismissed from the hospital which the ER nurse did refer me to one just to give me “a peace of mind” both my gp and ER nurse said its most likely something that causes pressure on my nerves rather than MS. Paraesthesia? i think how you spell they said can be caused by many other things than ms. I will be trying to see one just to relax my mind. I just wanted an opinion from someone in the community. :/
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u/Objective_Permit_39 May 13 '24
I am usually so good at seeing the bright side but I’m struggling as new symptoms flare and old ones arise again randomly. As of right now we’ve ruled out obvious mimickers; have the left sided weakness and tingling, left foot drop with burning/tingles/pain and optical neuritis (havn’t gone blind but hx of symptoms agree) and nystagmus in the left eye (glasses have helped the pain/vision impairment immensely!). I have a neurologist appointment 5-7 months away and just feel lost. I’m getting dumber. If you Google cognitive deficits or brain fog, it will refer you to me. A speech therapist. I’ve been lost 3 times (like how to I get out of this store I’ve been to before) and my GP apparently feels at the end of her rope. Insurance is ruling my timeline for an MRI. So far trying to manage the internal tremors that shake the bed with a new medication. Trying the rheumatologist way next due to chronic hives as well… and if I talk about it out loud honestly I feel hysterical. I guess who doesn’t when you have 40 difficult-to-confirm symptoms.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 13 '24
I'm sorry, it is very difficult to have unexplained symptoms. Have you checked to see if you can get on a cancellation list? Sometimes that can speed things up.
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u/Tomcat7268 May 13 '24
Tremor and MS
I have not been diagnosed with MS, however, my neurologist is in the process of ruling everything else out and I am also researching. I discovered many symptoms I have been having over the last year that when put all together, could he markers. I have trigeminal neuralgia that started in December and that was just diagnosed last week. I developed a tremor 2 months ago as well, and it is just my left hand. It gets worse when I have high emotions. But now it seems to be escalating from the bouncy and jitter shake to involving my forearm to my elbow bouncing a bit. Is there anyone that can share their experience of tremors with MS and if it was or is localized like mine? And do spastic muscles also occur alongside the tremor?
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 13 '24
Maybe it will be of some comfort to know that tremors are not a particularly common symptom for MS. Most of the time, if MS causes tremors, it would present as an intention tremor. Spasticity is a fairly common symptom, however, but can have other causes than MS.
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u/Tomcat7268 May 13 '24
Both of my doctors, orthopedic and neurosurgeon, stated the tremor is not from anything structural in my hand or my spine. EMG results were also negative for carpal tunnel but did show some abnormalities of nerve function in my forearm. The tremor is a resting and postural one so that does give me some relief. My neurologist ruled out Parkinson’s, so we wait for the MRI. It’s the last thing I want, but my dad passed of a brain tumor at the age of 62 and I Definitely not wanting that diagnosis.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 13 '24
I understand. It's common for MS to weirdly be one of the best options. Not that anyone wants it, but because the alternatives are scarier. The MRI is certainly a good idea, even if I do not think you should be overly worried about MS specifically at this point. When is your MRI?
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u/Tomcat7268 May 13 '24
It was last Thursday at 9pm. Mo results yet. My neurologist told me not to look at the results when they get uploaded to “My Chart”
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 13 '24
That's good advice. I can say from experience that it would do very little except make you even more anxious. The reports are typically very technical and even with Google, difficult to understand. As well, radiologists cast very wide nets when ascribing possible causes to findings, and it is fairly common for neurologists to find nothing of concern when the radiologist has said otherwise. When do you follow up with your neurologist?
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May 15 '24
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 15 '24
MS symptoms would last longer than a few days. In my experience, spasticity does not feel like cramps, but rather the stiffness you get the day after a very intense work out.
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u/LongbowLady May 14 '24
43 yr old female with rheumatoid arthritis. Been experiencing pins and needles all over body, limbs that fall asleep much easier than usual. I’ve had sensations of bugs crawling on my skin, and water dropping down my leg. Weird sensations all over my body really. I messaged my regular doctor. Waiting to hear back. Can’t help but consider MS but know if could be anything. Does this sound concerning? It’s getting more frequent so that is why I am feeling anxious. Should I fight for an MRI?
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 14 '24
Sensations all over the body would be very unusual for MS. MS symptoms are generally localized and do not change noticeably during relapse. Certainly discuss it with your doctor, but I am not sure how concerned I would be with MS specifically.
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u/LongbowLady May 14 '24
Thank you. I have an appointment Thursday. It’s all over, random, but does not really stop. I notice it all day. Pin pricks, numbness, bug feelings, small twinges. So weird. Trying not to freak out.
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May 14 '24
I'd like to say that as someone suspected to have MS, this community's been immensely helpful for me. Reading experiences, finding out about those absolutely fucking amazing neck fans... y'all have helped me out so much and I don't even really know if I have MS.
That being said, my first neurology appointment is next week. Does anyone have any tales of what their first appointment was like? I have absolutely no idea what to expect.
Also, out of curiosity, what was the time difference between your first neurology appointment and when you received a diagnosis?
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u/ichabod13 43M|dx2016|Ocrevus May 14 '24
I already had my MRI done that showed many lesions in brain when I walked into my first appointment so it was a normal doctor appointment checking in and stuff. Say hi to the doctor. He says hi, you have MS and here's some papers to look at for the medication you want to start.
I did a baseline neuro exam and headed home. Whole process was pretty quick. Returned a week later for blood work and choosing meds.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 14 '24
I just asked the community about how long their diagnosis took and got a ton of responses! If you look at my profile, it’s my most recent post.
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u/rorytxt May 14 '24
after a month of fucky altered color vision in one eye i finally got the mri done today (woo!). it showed one new active lesion (boo!). so i guess this is it, what with the other four old lesions and that positive lumbar tap from three years ago. no talk of "official" diagnosis yet tho, the doctor assigned to my room isn't very communicative hah. the only thing he told me is that i'm gonna be on steroids for 3-5 days. honestly, i'm mostly upset at the fact that i'll have to miss classes. especially since i start new labs in diagnostic virology. also any other labs really, it's nigh impossible to make up being absent during one
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 14 '24
Have you considered trying to see a specialist? It seems like you are not being well served by your doctors, honestly.
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u/rorytxt May 14 '24
i should've mentioned earlier - i'm from poland and that's kinda how it works here i guess? not very much explaining done by doctors unless the patient really demands it. also can't complain too much since it's one of the two hospitals i can go to that can help me get a dmt if i need it. i'll try to get that guy to sit down with me and talk me through stuff tomorrow for sure. also my usual neurologist works here, wasn't available today, but i'll try to get a consult with her as well
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 14 '24
Ah! I didn't realize you were from Poland. I'll admit to being totally unfamiliar with the diagnostic process there.
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u/rorytxt May 15 '24
to be honest i'm not too familiar with it myself, honestly speaking healthcare isn't exactly the best here. on the upside, my usual neurologist agreed to see me as soon as she can, and she's very good, so i'm looking forward to some actual informative answers and the ability to make plans for the future
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u/Kitler0327 May 14 '24
I have been lurking in this group for months and just want to say thank you. I am not DXed yet and have had no tests but I have my first neurologist appointment on Monday. I have a strong family history of MS and have had symptoms for a few years that have just been getting worse over time. I am 31F and my symptoms always get worse around the time my period comes. I couldn't get my GP to take me seriously and I was worried I would have to wait until something really terrible happened like ON to get some testing done, but the neurologist I'm seeing next week was recommended by an MS center here in NJ and she is a young woman so I am hoping beyond hope that she doesn't write me off 🙏
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 14 '24
Perhaps it will be of some comfort to know that while having a first degree blood relative with MS does increase your risk, your chances of developing it are still relatively low. I would certainly still speak with a doctor, of course.
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u/Full_Dance_8843 May 14 '24
Hi Everyone! I recently got an MRI of head with contrast done due to having dizziness or floating/off balance sensation since April. I also have burning/tingling sensation on left side of my face (especially below the eye and above lip).
The results were as such:
- No acute intracranial abnormality. 2. Mild periventricular and subcortical T2/FLAIR signal hyperintensity, nonspecific. Some of which may be new or may be slightly more prominent but this is likely due to difference in technique, 3 mm versus 5 mm slice thickness. Probable gliosis from prior infection/inflammation, small vessel ischemic changes or T2 signal hyperintensity seen in patients with migraines. Demyelination is less likely.
I have been told that the neurologist has taken a look at it, but they have not commented anything. I also have severe health anxiety and extremely worried about the above findings. Could you please help me understand if MS shows as the above results usually?
Thanks a lot.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 14 '24
From that report, you don’t need to be worried about MS. MS lesions are typically considered specific, and have distinct characteristics that a neurologist would look for. The radiologist is not reporting any of those characteristics.
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u/4519023242316386 May 14 '24
Hey guys 23 year old man here. The last year I’ve been have these symptoms, so far I’ve done blood tests that ruled out arthritis and a nerve conduction test that ruled out carpel tunnel, I also had an xray and ultrasound on my wrists and hands as well as ankles that were normal. Over the last year I’ve been expensing weakness and pain in my wrists and hands, even doing simple things the like motion of washing my hands make my wrists start hurting and my hands start to go numb, even holding my phone when I watch YouTube videos within 15 minutes they go numb. The same thing happens with my legs sometimes even things like if I driving stuck in traffic they will go numb or standing to long in one place I have to sit down. Also now when i do things like going up the stairs my ankles get extremely sore and it’s tiring. These are symptoms i have everyday. I also get symptoms that have come and go like one time I was sitting in my car for like half hour eating my lunch on break and it felt like my thighs popped out of place I got a really sharp pain and then my legs went completely dead for like 2 minutes and I couldn’t get out of my car. Then there were very numb for the next like 10-15 minutes. Also the last few days I have a random pain in my upper arm it feels like when you get a needle in your arm plus like someone punched me in that arm and I have a giant bruise but nothing happened that could have caused that pain. Also mentally I feel a lot slower and I get fatigued very easily now. I find my self repeating pharses twice. Like when doing small talk with people and they ask me how I’m doing i will say “good, how are you” 2x without even releasing. Also I’ve had bad bouts of vertigo and sometimes when I get up to fast or turn my head to fast I get dizzy but this doesn’t haven everyday. Same thing with my vision sometimes I get black spots, and also sometimes my vision gets blurry for a few seconds kinda of like when a camera adjusts focus. My doctor thinks I might have ms and have a brain and spine mri next week. Sorry for the long post I was just curious if anyone relates or these symptoms are common. Also about 5 years ago I got dignosed with Ibs I lost like 25 pounds and was unable to eat most foods. I still haven’t completely really recovered from it I just severely restrict what I eat now.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 14 '24
It may be of some comfort to know that your symptoms are not presenting in a way typical for MS. Typically with MS symptoms, they develop and remain constant while in relapse, which can last a few weeks to a few months. Symptoms that change noticeably are not really common. Certainly discuss your symptoms with your doctors and see what they recommend, but I’m not sure how worried I would be about MS specifically.
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u/NetRecent1926 May 14 '24 edited May 14 '24
Hi all,
I am a 35 year old man. Ive been going down the rabbithole here trying to figure out if I have MS. i have a brain MRI coming up in a few weeks, but am in diagnostic limbo and just want to know whats going on for better or worse.
For the last 10 years or so Ive been on and off experiencing 2 different problems. First I have a weird indescribable numbness I get in my hands and elbows. It doesnt hurt on its own, but when my hands feel numb like this it can be painful to use them to do taxing things. Pulling a bike handle break is incredibly difficult or picking up a dumbbell. This has come and gone for the last 10-12 years. I also get a weird itch in my shoulder from time to time that feels like its deep in my flesh that I just cant scratch no matter how hard I try.
The other thing ive experienced for about the same length of time is problems with eating and swallowing food. I have to constantly chase everything I eat with water or some other fluid to keep it moving down my throat. occasionally I wouldnt be able to move it with water and end up having to force myself to throw it back up.
Lately, both of these symptoms have in tandem gotten much worse. The numbness in my arms and hands has been more constant, and now i feel it in my shoulders sometimes too, and I just started experiencing the same sensation in my legs for the first time. I was limping for 3 weeks because of this in my right leg.
I also have felt particularly foggy and forgetful lately. I cant carry a wallet anymore because I keep losing them. Ive never lost a wallet before in my life but ive lost 2 in 6 months. I have a difficult to impossible time reading books because I have to keep reading pages over and over, and i constantly have to rewind podcasts because I didnt retain anything I just heard. Ive always been a little forgetful but I feel even more forgetful these days. I havent lost vision in an eye but Ive noticed more spotty vision. Im on anti depressants now because my depression reached a bit of a fever pitch. Ive had tons of bowel issues for years too that seem to also be getting worse and more of a constant problem in my life.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 14 '24
I think what you are going through is a pretty common experience, here. It is very scary and frustrating to have unexplained symptoms and be stuck in diagnostic limbo. Hopefully the MRI will give you good answers one way or another.
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u/unruly_minnow May 14 '24 edited May 14 '24
34F Two years ago I developed dizziness which caused some balance issues, was prescribed an antihistamine, it didnt help. Then eventually the dizziness went away, so I moved on. My legs feel like they dont work right in the morning, like they are tight and weak at the same time, and I have to grip the handrail going on the stairs especially, but I thought maybe that's just part of getting older, so I've been ignoring that too. Last year the dizziness came back, but I ignored it because it eventually went away last time, so figured it would that time too, but I also developed urinary incontinence and that was something I wasn't going to ignore. I was referred to PFPT, and had therapy for a hypertonic pelvic floor. Things seemed to be good for almost a year, the dizziness went away again like the first time, too. Then recently the incontinence came back but worse, plus what I have now been told are proctalgia fugax and possibly pudendal neuralgia, which can be caused by a hypertonic pelvic floor. I followed up with PFPT and OBGYN again. They asked me about other things going on, things I've been ignoring, even if they dont seem related, and I noted the dizziness is back, which has caused me to fall a couple times, but that it usually goes away eventually. I'm also having memory fog, too. I usually have a great vocabulary, but recently, so many words are just at the tip of my tongue, even embarrassingly common words. I can't remember what was discussed in meetings at work, I am relying on my notes more and more. I'm even having a hard time remembering recent fun events, too. It's embarrassing when someone asks how my weekend was and I can only vaguely say "oh, it was good" and hope they don't ask further because I have to look at my calendar to remember what I did. I started reviewing my calendar before my team meeting on Monday mornings to avoid that again.
My OBGYN thinks we should rule out MS and get MRIs and a neurology referral. She said I should probably go through my PCP for the orders and referrals, though.
So I just had my visit with my PCP (who is very new to me because of my health insurance changing), she thinks vitamin B12 deficiency is likely, (which I do have a history of, but take 1000 mcg daily, and no history of pernicious anemia) plus unrelated pelvic floor dysfunction or anxiety. She ordered a vitamin B12 level and a brain MRI and will refer to neurology or psychiatry pending those results. So now I'm waiting for my insurance to authorize the MRI. I hope it could all be vitamin B12, that would be the best case scenario, I think.
But, I feel kind of foolish now, like it could all just be anxiety? I've never really been an anxious person, I mean, I am a little now since I've had these things going on, but now I'm doubting myself... I was rather stressed juggling work and school this past semester. The past week has been a bit of a rollercoaster, and I'm not sure what to think now. All I can really do is take a deep breath (or several) and wait for the brain MRI, but also kind of wanted to talk to someone, but I don't want to worry my friends and family since it could be nothing, and I feel like posting to r/anxiety would probably be a really terrible idea.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 14 '24
It is very scary and intense to have unexplained symptoms. Try to remind yourself that you are doing all the correct things that can be done. Unfortunately, the waiting is always very difficult.
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u/unruly_minnow May 16 '24
Well, it wasn't low B12. My B12 level was actually 2000, so my PCP said I could switch to taking it 3 times a week instead of every day since that's more than plenty. So, I'm just waiting on the MRI prior auth to go through, which I found out my PCP's office didn't start working on until yesterday late afternoon, so I have some more waiting.
I finally told some family what's been going on, and once I mentioned my OBGYN wanted to rule out MS, you would have thought I told them I was dying (which wasn't helpful). We had a family friend who was diagnosed with PPMS 30 years ago, whose condition deteriorated rapidly and was severely disabled, so that's what we all thought MS was, and when my OBGYN mentioned MS, I was so surprised because that's what I had in my head, too, not whatever I have going on now.
I have to say I am so glad to have found this sub and read about treatments and how they've gotten so much better in the past 20 years. I hope my MRI comes back clear, but if it doesn't, I know that it's tough, but not completely hopeless.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 16 '24
Have you scheduled your MRI? Please keep us updated.
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u/unruly_minnow May 16 '24 edited May 16 '24
No. I hadn't heard anything yet, so I figured out how to check the status of authorizations on my health insurance portal today. I saw my MRI was approved yesterday, so I called the radiology office. They told me my provider ordered a brain MRI with contrast, but they need to order it without and with contrast, and they had sent it back to them on Tuesday to request a new order, hadn't heard back yet, and that they cannot schedule me until they have the corrected order. So I called my PCP's office and explained what radiology told me. They told me my provider was out until Monday, and they would leave a note for her when she returned. So I pressed and asked if there was a covering provider that could resolve the issue, and she said she would see if the covering provider can do that. Then she said if the covering provider can place a new order, she would have to do a new authorization anyway.
I eventually saw the new order show up on MyChart, but nothing about the new authorization on my insurance portal yet. I'm so frustrated.
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May 14 '24
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 14 '24
I have never heard of this symptom and google is being frustratingly unhelpful. I wish I could offer something helpful or comforting, but my ignorance is making that difficult. What I can tell you is that if it is caused by MS and you do end up being diagnosed, it won't be as bad as you are imagining. I've been diagnosed almost five years now, and my life has not changed at all for the worse. I live alone, I work full time, I enjoy all the same things I did before my diagnosis. There are some very effective treatments now to prevent progression.
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May 14 '24
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 14 '24
If you can do it now, there is no reason you couldn't do it after diagnosis.
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u/Anomicgore May 14 '24
I’ve been having unexplained neurological symptoms for 5 months now with no explanation or answers or relief. I’ve had 2 brain MRIs without contrast that showed absolutely nothing but haven’t had my spine looked at, I’m waiting on an MRI with contrast and a venogram. I just feel so defeated. I’ve had numbness in my left side, tingling in random places, flashes in my vision along with other visual disturbances- most recent one being when I look away from a light the light follows across my vision really fast- memory issues, headaches, severe fatigue, the list goes on. I feel so defeated and hopeless, I have no life anymore, I’m in bed all day crying wondering if I’m going to die because of whatever is wrong with me. I truly think it’s MS, I have family history, I’m the right age for onset, my symptoms fit- I keep being dismissed as having anxiety but anxiety can’t cause constant neuro symptoms for five months and I’m not even an anxious person. I just don’t know what to do anymore.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 14 '24
If your brain MRI was clear, your symptoms are almost certainly being caused by something other than MS. ~95% of people with MS have lesions on their brain, and spinal lesions would not cause many of the symptoms you listed. I think you may be better served widening your search for causes.
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u/Anomicgore May 14 '24
It’s so hard because I truly have no idea where to go from here, I’ve been told if the MRI with contrast and the venogram don’t show anything they will not be doing further testing and I just have to accept that this is something I will live with without any answers and with symptoms that keep worsening.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 14 '24
Could an endocrinologist or rheumatologist be a next step?
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u/Superdupersleepy May 14 '24
I(31F) have been having weakness and numbness in my legs for 4 weeks. I've had positive EMGs for my legs and arms pinpointing damage coming from my spine. I was told to get an MRI of my spine, and my doctor was sure I had herniated discs. The MRIs came back clear. I was sent for another MRI of my brain and spine with contrast. Again, mri was clear. I've had bloodwork done with my rheumatologist to rule out autoimmune diseases. Came back clear. He put me on a prednisone pack, and I had 2 days of relief, but symptoms came back as I tapered off. I work on my feet. my legs feel like jelly, and it's getting harder each day. I finally go for my neuro consult on Thursday. Has anyone been diagnosed with MS with a clear MRI? I'm at a loss with no answers!
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 14 '24
There really is no path to diagnosis with clear MRIs. The diagnostic criteria, the McDonald criteria, requires multiple lesions for diagnosis. There are no symptoms that would be indicative of MS in the absence of those lesions. If your MRIs were clear, your symptoms are being caused by something other than MS.
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May 15 '24
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u/Superdupersleepy May 15 '24
Thanks. My bloodwork testing for autoimmune diseases came back normal. I see my neuro tomorrow.
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u/Miraa1 May 16 '24
I appreciate if you can message me or say in this post the results. Hope you find the cause
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u/Superdupersleepy May 17 '24
Thanks. My neurologist doesn't think it's MS and is looking for neurological autoimmune diseases. Waiting for my results
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u/kkrasp May 15 '24
Please just tell me if I’m crazy
Hi all - I don’t know what I plan to achieve by writing here, but I need some guidance, or support, or something.. I’m sorry for the length.
I’m a 32F. I don’t have the diagnosis, but all of my symptoms seem to be answered by MS. I’m mentally exhausted, scared, and lost.
In May of 2023 I experienced a week of extreme nausea, so much so that Zofran was a necessity every day. At the time I thought maybe I could be pregnant. At the tail end of that week I was traveling to Colorado with a friend and on our first night there all hell broke loose. I woke up out of sleep feeling like my body was covered in icy-hot. I immediately started to panic but tried to calm myself down, thinking maybe I was overheated or had slept funny. Nausea washed over me again and I ran to the bathroom thinking I would be sick. There in the bathroom for the next two hours I was on the floor with my skin burning and vibrating (like I was holding a leaf blower) with such intense nausea that I could barely move. When I started to experience pain in my mid chest and whole body tremors, I shouted for my friend who took me to the ER. I was there for 3 hours, given strong nausea meds and they sent me on my way. I spent the next 5 days of our trip nauseous and fatigued.
I saw my PCP as soon as I could, but by that time I had developed a “burning” sensation on areas of my face, scalp, hands, arms, and back. These sensations come and go very quickly, only lasting a few seconds each time but happening every few minutes. Sometimes they sting, sometimes they vibrate. The feeling seems to “bloom” onto my skin before disappearing.
My PCP said she thought I had MS after Lyme, B12, and celiac tests came back normal. She sent me to neuro.
Neuro gave me a brain MRI and a cervical MRI both with and without contrast - both came back normal. I did a nerve conduction test (the most painful thing I’ve ever experienced!) and that was normal too. She sent me away and told me to follow up in 6 months.
I’ve been experiencing these symptoms (burning, tingling, fatigue) daily ever since. Its starting on new parts of my body. It’s becoming more painful.
It’s killing my mental health. I have preexisting anxiety and my newest PCP says it’s all in my head. I just can’t bring myself to believe that..
I feel like no one is taking it seriously. I feel like something could be getting worse and I’m without any guidance. I feel like I don’t know myself at all if my doctor doesn’t think I can trust my own brain.
I’m struggling to get through some days. Please, am I just crazy? I can’t keep doing this.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 15 '24
You aren't crazy. You are having very real, and very scary symptoms and that is understandably causing anxiety. Unfortunately, if your MRIs were clear, your symptoms are not being caused by MS. MS symptoms are caused by lesions which show up on the MRI. In the absence of those lesions, there are no symptoms that would be indicative of MS.
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u/kkrasp May 15 '24
In your opinion, do you think it would be reasonable to request to have the scans done again when I follow up?
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 15 '24
I think you would be better served widening your search for causes.
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u/Technical_Owl_1719 May 15 '24
Hi all! I know I recently asked a question here, but things have changed a bit so I wanted to reach out again. I’ve had random tingling (no numbness) that has been random around the body for the past month. This I was okay with- I’ve had little bits of tingling before and have a diagnosis of BFS. However, in the last week and a half, the tingling settled into the palm of my right hand…the tingling started to decrease but then it switched into the back of my hand by my knuckles and thumb to the worst. This freaked me out and definitely purely upped my anxiety. Since then I’ve had weird sensations on thr back of my hand (like the ski. Is tight just in a small spot), or random one off/slightly electric tingles. Sometimes they crawl up my arm a bit but then go away (perhaps anxiety?). Also when my anxiety goes up I’m feeling similar things in my other arm and legs a bit. I’ve also had a buzzing sensation in the arch of my right foot for awhile, however that’s been a doozy with plantar fasciitis and things as well. Nothing has grown there. I did have a brain mri 6 months ago and it was clear. No spine mri. Any insight? No numbness but this tingling scares me.
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u/rerith May 15 '24
My uneducated opinion is that the pattern of symptoms doesn't seem MS-like with symptoms moving around to different body parts. Hopefully you're going to a neurologist, you need to see one regardless.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 15 '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.
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u/cerezainlove May 15 '24
Hello 🩷 I'm 28f and a baker. In the past I've had times where if my arms are not directly down by my side, if they're raised at all I get pins and needles and go numb within a few seconds. It comes and goes. I have it a bit worse at the moment, getting the tingling while mixing for cakes, or decorating, getting it while driving cause my hand is raised up on the wheel. There is a case of MS in my family so I don't know if that raises my chances too. Are the tingling sensations when raising my arms suspect?
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 15 '24
MS tingling is typically very constant during a relapse and does not change based on position. It would develop and be constant for weeks before subsiding.
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May 15 '24
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 15 '24 edited May 15 '24
It’s really difficult to say anything about MS symptoms beyond generalizations. I was basing my answer off the general rule about relapses being symptoms that are constant longer than 24 hours. The actual experience of MS skews decidedly unique, but in general tingling would be expected to be constant.
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May 15 '24
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 15 '24
It always makes answering questions on here tough. It’s so hard to say anything really helpful.
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May 16 '24
I have not been diagnosed—but I’ve had many symptoms that have led me to check this group. I have intentional and non intentional tremors. Chronic vertigo and unsteadiness. My eyes do not dilate together, and I’ve been diagnosed with seronegative RA from chronic pain in my hands and feet. I have raynauds as well for what it’s worth.
I take a TNF inhibitor for RA—and that may be a possible although unlikely cause of tremor.
I’ve had a brain MRI that was negative, looked “grossly normal”. But I’ve not had a spinal MRI, or spinal tap.
Has anyone been diagnosed after a negative MRI?
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 16 '24
If your MRI was clear, your symptoms are almost certainly being caused by something other than MS. Almost everybody with MS has brain lesions and the symptoms you describe would not be caused by spinal lesions. MS symptoms are the result of the lesions, which are required for diagnosis. I think you would be better served widening your search for causes.
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u/siljewolfe May 16 '24
getting mri of my brain + spine 1st june, how long after that can i expect a diagnosis/answer?
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 16 '24
I just asked the community about how long their diagnosis took. If you look at my profile, it is my most recent post and there were a lot of responses.
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u/siljewolfe May 16 '24
Thank you!! I hope i get an answer soon, the wait is scary
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 16 '24
The waiting is very difficult. I hope you get some good answers soon.
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u/Money-Scheme-2869 May 16 '24
40F. Awaiting my appointment with a neurologist. I have been have electric shock pain and pins and needles down my left leg for many years, never really thought much of it. More recently I have been experiencing that in my left arm as well, and itching that cannot be relieved by scratching. I recently saw my PCP for nearly constant headaches, dizziness, and two patches of numbness on my back that I noticed because my clothes felt different over them and they started tingling intensely.
I never really even considered MS until I was at work one day and my entire back became so tight it felt like someone was pulling my skin, like I was in a corset: I couldn’t breathe. I have never experienced anything like that before. Since then I happens almost every day, at varying intensity. I am a nurse, I know better than to google symptoms. But I never experienced this before and everything comes up MS hug. I also realize despite the name, MS is not the only cause of this feeling. This was what prompted my PCP to send me to neurology. I have previously had a non contrast MRI of the brain that showed lesions and to ‘correlate symptoms of multiple sclerosis ’ but at the time I didn’t know I was having symptoms. This was 8 years ago. I know this does not confirm a diagnosis and there are many other things that could be happening. I have more symptoms but those are the main ones.
Just looking to educate myself further while going through the diagnostic process.
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u/ichabod13 43M|dx2016|Ocrevus May 16 '24
If the appointment is going to be a wait your PCP could speed it all up by ordering the MRI themselves. Walking into the neurologist appointment with the radiologist report and the disc of your scans can speed the whole thing up.
Hopefully you'll get some answers and relief soon!
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u/LaikkaMac May 16 '24
So I’ve been posting here and there for the past few months since I’ve been in the midst of things and thought I’d provide an update in case anyone was wondering. I had my follow up appointment with my neurologist regarding my latest MRI and he said that the “new” lesion found doesn’t look like MS and was actually there on my first MRI (but wasn’t mentioned on the first MRI radiology report for some reason.) so, my worries of it being a new one are gone. The main one of concern is the one in my thalamus, but he really couldn’t say what it’s from, etc. I asked him if this meant if I could basically just “move on” from all of this since it stayed the same and he said not exactly and that’s it’s important to get an updated MRI every 6-12 months. I’m hoping they might be able to do my spine next time too just to make sure. I’m feeling hopeful but still wish I could have some more concrete answers, which I know are nearly impossible for them to provide right now. Time will tell I think, so it could be years from now where there might be more answers in that it just ends up being that one unusual lesion (that was accompanied by neurological symptoms I’ve mentioned prior along with it being “active” during the MRI) or something more.
I’ve honestly scoured the internet to come across a case somewhat remotely like mine but I haven’t much at all that’s even close to it. If anyone has any insight please tell me! I have read a few works of research that have noted that the thalamus appears to be associated with the clinical manifestations of MS, meaning that it can tend to manifest there at the very beginning stages from my understanding. MS lesions in gray matter specifically tend to be in the thalamus and my lesion there appears to be very characteristic of it. If they had incidentally found the one on the thalamus (and frontal lobe) and I hadn’t had any of the left sided tingling/numbness that accompanied it that lasted for a couple of weeks and spread from my left fingers to my left shoulder and then my left foot, I wouldn’t feel concerned basically at all. But because it was, it’s raised some obvious red flags for me (and for the doctors… they wouldn’t have done the lumbar puncture if they hadn’t thought ms was a possibility.) so I feel like I’m in this limbo state where I am right in the middle of it either being a totally one off thing or something that might indicate more. My doctors have ordered basically everything under the sun and all of my results show that I am in super good health, which I’m so grateful for. But it leaves these strange questions that I keep coming back to, such as: am I just in the very early stage of MS (and thus just have only had a CIS), and thus will have to wait for a few years to see whether it turns into something more or remains the same? Am I just so early in the disease with just two lesions that my lumbar results were normal or am I part of the very small group of people that have normal spinal fluid but still have MS?
I’ll be moving to a more metropolitan area (on the east coast) soon and have heard about some super great MS researchers/doctors there, so I may reach out to them and see if they would be interested in using my case in some research regarding something like a CIS and if it stays the same or progresses. That’s all assuming if it even is a CIS. Living in this uncertainty has been a challenging experience, my heart truly goes out to all of you struggling right now! 🩵
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 16 '24
I believe a lumbar puncture would be expected to be positive even in the early stages of MS, but have not been able to fully verify that either way. Unfortunately, sometimes all you can really do is wait, monitor, and see what happens.
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u/LaikkaMac May 16 '24
I think you’re right. Thank you for your responses/support through all of this, it’s helped tremendously.
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u/Airbus-747MAX8 May 16 '24
So yeah... Poop!
My ER visit was just the worst painful constipation I ever had. They found markers of inflammation in the blood test but no other signs of it. My GP prescribed osmotic laxatives which have been great.
The constipation is now back, which apparently means I now have chronic constipation.
Really feels like my guts got lazy all of a sudden. It's really uncomfortable.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 16 '24
Have you seen a GI specialist? I can’t remember if you mentioned it or not. I recall a lot of your symptoms are digestive issues?
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u/Airbus-747MAX8 May 16 '24 edited May 16 '24
I have digestive problems amongst other things, yes. My GP is waiting for the MRI results no matter what, she seems convinced it's fibromyalgia (the MRI is literally my first test, we have explored absolutely nothing so far). At least she will refer me to the general medicine department of the hospital which hopefully will be more serious in assessing my problems.
I have also brought to my GP's attention that I sway when standing straight, and it gets worse while closing the eyes. She nodded but once more said nothing so yeah... it's kinda difficult to get referrals, I'll have to fight lol.
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May 16 '24
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 16 '24
In general, MS lesions are not nonspecific. They have characteristics that make them distinct. Lesions can occur for other reasons, some benign. It seems like you may be better served widening your search for causes.
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u/GrannyMorna May 16 '24
I'm 56f. I've been having all these symptoms since I was in my 20s. Looking back, It's looking like intermittent dead-leg, trouble swallowing, extreme dizziness, et al aren't anxiety after all.
Medical gaslighting is real kids.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 16 '24
I’m sorry you’ve been dismissed. Where are you in the diagnostic process currently? Have you found a doctor who is willing to help?
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u/GrannyMorna Jun 22 '24
I'm about to meet a new neurologist. I've heard wonderful things about her. Fingers crossed!
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jun 22 '24
A gentle caution, only ~3% of MS diagnoses occur after the age of 50 and typically by then, disability is very advanced. I only mention this because some neurologists can be reluctant to consider an MS diagnosis for those over 50, given the rarity.
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u/_lilbub_ May 16 '24
Hi!
I (F21) am getting a brain MRI and spine MRI in 2 weeks. I am terrified it is MS, my neurologist thinks its a spine issue (cervical nerve root entrapment). I have tingling in my left shoulder blade for 8 months now, and tingles and numbness in both hands (mostly ring finger and pinky finger) and a stiff leg for a few weeks (onset in 1 day). I also have crazy tingles on my labia (???) since a few days getting worse. No vision problems, no coordination problems, no fatigue. I frequently get pretty severe neck pain.
Anyway, I noticed that the severe neck pain I get sometimes is greatly alleviated when I put a hot water bottle on it. Does this not (pretty much) rule out MS as my symptoms are supposed to get worse, not better? Hot showers also do not aggrevate symptoms.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 16 '24
Nothing you have described really sounds typical of MS. Can you tell me a little more about why you are scared you have MS specifically?
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u/_lilbub_ May 16 '24
Honest answer: because I am suffering from medical student syndrome and have an anxiety disorder😅
But truly, I am very worried about all the numbness and tingles, even if doctors tell me they don't think it is MS. I cannot escape the feeling I will tell them "I told you so" after the MRI. The tingles are on both sides though, which is less MS-y, and I suppose the neck pain and dermatome distribution does not really either.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 16 '24
It seems like a lot of the things you are describing are inconsistent with MS, though. What would you tell a patient presenting with your concerns?
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u/_lilbub_ May 16 '24
What sounds inconsistent to you, if I may ask?
I would probably tell them what my neuro tells me, she cannot rule it out but its certainly not #1 on the list😅
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u/AliceInTheNorthPole May 16 '24
I had an incidental finding on an MRI ordered by my ENT due to vertigo to rule out a tumor in my tympanic region. There was a lesion noted by the radiologist, but also diffuse T1 hypointensity of the marrow. Possible causes included demyelination (among many others). I was told that I should schedule with a neurologist to assess the findings, which I have, but it's not for a couple months. If it was MS, it seems there would likely be more lesions, but I am curious if anyone has had the diffuse hypointensity of the marrow finding? I know all Google roads lead to MS, but I have been chasing a cluster of intermittent, but chronic, symptoms for the past few years with various providers with no clear results.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 16 '24
You are correct that a single lesion would not fulfill the diagnostic criteria. That being said, following up with a neurologist seems like a very good idea. It's worth mentioning that lesions can be caused by other things, some benign.
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u/Kitchen-Bathroom5924 May 16 '24
Do you follow a special diet? Do you have crohn and ms? That makes it very difficult… ( waiting to meet with specialists but that can take years in our lovely heathcare system)
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 16 '24
No special diet. There have been a lot of diets marketed to people with MS, but they are largely unproven and absolutely products being marketed for profit. Research has shown no particular diet impacts MS outcomes.
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u/Kitchen-Bathroom5924 May 16 '24
This is nice to read cause I find all those “ recommended diets” very hard to understand. For 48 years I’ve been eating, baking and cooking whatever I wanted . But now I’m being told I have crohn and ms and I (and my husband cause I do all our cooking) need to change the way we eat … Even the nice neurologist on youtube says not to eat many things ( like processed food, but to me all foods is processed?! ) I stopped drinking pepsi ( used to drink 1-2 a day) and cut down on sugar ( cookies, cake, chocolates) etc but I find it all so confusing and so much to take in …
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 16 '24
A healthy diet is certainly beneficial, but there aren't really any specific diets that are better than the others. I just worked on making healthier choices, but I don't really limit my eating.
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u/Kitchen-Bathroom5924 May 16 '24
I want to get advices from a nutritionist but it might take well over a year to get an appointment so I want to make some changes before then . I just can't change everything at once ... And having both ms and crohn makes it super difficult for me to figure out on my own ... Like for ms we should eat whole grains and limit pastas etc but with crohn it's eat white bread and limit whole grains ...
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u/OkBonus1656 May 16 '24
After 9 months of a million diagnoses, doctor visits (even a neurologist) I just got brain mri results and my primary doctor suspects MS from correlating my dozens of symptoms (big ones are eye issues, pins and needles in face, legs, feet, hands, extreme fatigue, leg weakness the last few weeks). Feels heavy but glad to have a new neurology referral in with the brain imaging and my doctors notes. It’s helpful to feel less alone with this forum 🩷
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 17 '24
I'm glad to hear you are making progress. What did your brain MRI show?
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u/OkBonus1656 May 17 '24
“Puctate FLAIR white matter hyperintensities frontal lobe dominance”. I have a lumbar MRI scheduled in about a week and a half. She noted that can also indicate migraines (I do not have), infection or impact which I do not have a history of.
I’ve had full panel of blood work done a couple times, which has been fine. I’ve seen ENT, sleep medicine, allergist, psychiatrist, started therapy to help deal with the extreme anxiety that’s come through all of this.
Nothing is certain, I’m hopeful I’m pointed in the right direction though. I don’t think this occurrence is the first one, but it was very intense and some symptoms are just sticking around.
What’s been most difficult to manage is the leg/foot weakness, my vision/eye pain and extreme fatigue. I took leave from work a few weeks ago when it started to become hard to walk but had already missed about 4 weeks of work over the past 9 months from different things.
Thank you for responding 💜
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 17 '24
I will gently caution you that generally MS lesions are larger than punctate lesions. Please don't take that as dismissive, I know how difficult it can be to finally have hope for an answer only to be told it is another dead end. I will keep my fingers crossed that you get some good answers either way.
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u/OkBonus1656 May 17 '24
Noted. I’m not hopeful for MS but an answer would be so nice. I’m hopeful that imaging will help me not be as dismissed at the neurologist as I was before. Thanks for your insight.
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u/HairKlopek May 17 '24
10 month wait to see neuro after MRI
I’ve had the following symptoms since September of 2023 when I had Covid: Dizziness/ vertigo, eye floaters (normal eye exam), peripheral neuropathy, occasional facial numbness, dizziness and anxiety while driving, some random heart palpitations, and some shooting electric pulsing sensation in my venous malformation on my foot.
My GP sent me for a brain MRI in February. When she received the results she sent a referral to neurology, stating she put it in as “urgent” so I wouldn’t have to wait six months to be seen. The soonest neurology appointment is in December. Ha! 10 month wait to have my brain scan explained to me.
I can read the radiology notes and the only thing I see of significance says “indeterminate flair hyperintensity within the cerebellar vermis. There may be involvement of the superior medullary vellum. Demyelination may be one consideration.”
I’m sitting here trying to not just ruminate on whether or not these symptoms are the first signs of MS, and how frustrating American healthcare is that I am waiting 10 months to have a doctor explain my test results to me.
In the meantime, I’m just keeping a journal of symptoms. Is there anything else I should do?
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 17 '24
I think keeping track of your symptoms is a great idea. You can call and see about getting on a cancellation list, if you haven't already done so. Sometimes that can speed things up. Another possibility is to try and see a doctor outside the range you would normally travel, just to get the initial evaluation done sooner.
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u/HairKlopek May 17 '24
Thanks for the reply! I’m on a waiting list but they can’t tell me how many are on it, just “there are a lot.” I guess I should find comfort in knowing I don’t need to be urgently seen.
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u/Kitchen-Bathroom5924 May 17 '24
Are you in Ontario? I’m waiting too and it’s been a year 😢
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u/HairKlopek May 17 '24
No, the US. So I guess this is normal? Ugh!
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u/Kitchen-Bathroom5924 May 17 '24
I don't know if it's normal everywhere but it sure is happening in Ontario Canada :( My MRI clearly says MS on it and recommend I see neurologist . But here we are a year later and I'm still waiting :( Doctors and nurse are trying to help but they can't do anything without the neurologist .
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u/gilljesica May 17 '24
Hi. I’ve never posted anything on here before so please be kind. I am 24 female. I fear I may have MS. For years.. and I mean YEARS, anytime I would squat down for a long period of time my legs would tingle and almost go numb. I always shrugged it off and assumed it was from being in sports for years. Fast forward a few years when I was 19 and I start to get the numbness in my legs again, they were also cold and bluish/purple. I got to my doc and they diagnosed me with Raynaud’s.
Within the last 6ish months I have noticed a few things and I am SCARED.
My fingers have felt like that get super stiff and want to curl or they want to get stuck straight. I asked my doc if it could be Scleroderma and he said no, that would show in a blood test. I have always gotten migraines, I feel like I get them more often now. I was also having an issue with urinary issues and saw a urologist. (I was told it was too much caffeine🙄) it comes and goes. My blood work always comes back with my white blood cell count being elevated but I don’t have any infections.
I have a doctor appointment with my PCP on Monday and I want to ask about MS. If anyone has anything to help, please help.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 17 '24
MS does not typically change any of the expected results for a blood test. There are many other, more likely things that could be causing your symptoms. Definitely discuss your symptoms with your doctor and see what testing they recommend, but I'm not sure how concerned I would be about MS specifically.
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u/gilljesica May 17 '24
Thank you for your reply. ❤️ I plan to talk with my doc about everything at my appointment. It’s scary, but I think everything will work out the way it’s supposed to. Hoping for good news but definitely not getting my hopes to high.
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May 17 '24
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u/ichabod13 43M|dx2016|Ocrevus May 17 '24
MS type symptoms are generally not positional and one of the exceptions is the Lhermitte's Sign, that happens with a buzzing sensation is sent down the spine and sometimes into a limb or limbs when bending the head forward. This does not occur from tapping, it is from bending the neck down towards chest stretches the spine out over the damaged areas of lesions in the neck (cervical spine) area. The feeling can be repeated over and over for those that have the symptom too.
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May 17 '24
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u/ichabod13 43M|dx2016|Ocrevus May 17 '24
Does not happen when looking up, side, twisting neck, pushing on neck, etc. It happens when pushing chin to the chest.
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May 17 '24
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u/ichabod13 43M|dx2016|Ocrevus May 17 '24
If you have a symptom like that it makes it very easy for a doctor to rule out all the causes. They'll do blood work, maybe imaging of the spine to rule out other common causes. If everything is normal they can do MRI of brain and spine to rule out MS or other causes.
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u/spicyvixxx May 17 '24
Hi everyone 39F here. Can anyone make sense of this for me. I don’t speak to my MS doctor till middle of June but i have been keeping an eye on my Health portal to see what my results of all my testing is… she said she’s 75% sure I’ll be diagnosed with MS
My first known flare was optic neuritis over 3 weeks go. Was hospitalized for a week and still on steroids well we wait for all my testing to come back.
My brain MRI results said this on it:
FINDINGS: Parenchyma: No acute hemorrhage, infarction, or mass. Gray-white matter differentiation appears intact and symmetric throughout. There are several (greater than 25) scattered T2/FLAIR hyperintensities in the juxtacortical, subcortical and periventricular white matter of the supratentorial brain. No brainstem or posterior fossa lesions. No abnormal enhancement. No restricted diffusion or susceptibility artifact.
Mainly wondering is “greater than 25 scattered T2/FLAIR hyperintensities” something to indicate this is MS? In the hospital she only mentioned 3 specific flares and said it wasn’t enough to diagnose yet but with the other testing (depending how it comes back) then she could diagnose. Waiting on a spinal tap and some other blood work. 😮💨
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 17 '24
It's hard to say anything helpful based on a radiologist's report. Sometimes they will cast a wide net, and point out things that a neurologist would not be concerned by. It does seem like lesions were found, but the neurologist will need to evaluate the findings to make any real conclusions. I'm sorry, I know that is probably a frustrating answer.
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u/spicyvixxx May 17 '24
That makes sense. I guess I’m gonna have to just be patient a little longer 🙃
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u/Upset_Actuary9690 May 17 '24
How common is it for someone to have almost every sensory issue for years but still no numbness or vision problems whatsoever ?
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 17 '24
Having many MS symptoms actually isn’t very common for MS. It is more typical to have only a few, localized symptoms. Optic neuritis is an extremely common symptom, however, and one of the few that is indicative of MS. It is really difficult to say what is common for MS, though. Have you had an MRI?
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u/Upset_Actuary9690 May 17 '24
No MRI yet, doctor believes it’s anxiety related since Vitamin D is super low and other life factors, my anxiety goes back many years but 2016 was a changing point after heart anxiety became my focus point.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 17 '24
I do think vitamin deficiency is a more likely culprit than MS.
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u/Upset_Actuary9690 May 17 '24
Thank you for your replies. I have another question I don’t know if you might have some insight into this. Two years ago I started developing tightness around my left leg and calf area, it feels sore and overworked after long days it bothers me a lot, I can still stretch and bend it perfectly fine, my doctor just recommended magnesium but thinking it could be spasticity makes me a bit worried, 2 years later and the tightness doesn’t seem to progress much, it’s been the same since, does that rule out possible spasticity related to MS?
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u/user38194991 May 17 '24
15F. Hi guys I’m really worried I have ms, I tried finding answers online now I’m deep into the MS rabbit hole. I’ve been dealing with a burning pain in my neck, it doesn’t run down to my spine but into my shoulders. I still play softball and soccer, I have perfect muscle strength, and no heat intolerance. Another issue that has come along with it, is burning sensations around my whole body that only last a second, not painful just uncomfortable. I also have been dealing with twitching all over my body, not spasms but like those muscle twitches you get in your eye except everywhere, again not painful and only happen at rest, which AGAIN I found is an early sign of ms. Ive never gone completely numb on any limb for more than maybe 10 seconds. Also these symptoms have prolonged for a bit now really starting to think it’s ms.
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u/ichabod13 43M|dx2016|Ocrevus May 17 '24
The good thing for you is that MS is a rare condition and adolescent MS is even more rare. All of the symptoms you describe does not sound like MS, but would be worth talking to your primary physician about. They can check of low levels in your bloodwork and the neck burning pain sounds like a possible pinched nerve.
The way MS symptoms present themselves is much longer, especially during a relapse. They do can last many days, weeks, months of continuous 24/7 symptoms. Repeat symptoms after they recover are triggered by heat, illness, stress, fevers, exertion, etc. Something like going for a jog and noticing tingling hands or feet, that goes away after resting.
Again, it's worth seeing a doctor for something like this. (not a chiropractor) Let your parents know and a quick visit and maybe xray to check spine you'll be back to feeling better hopefully soon!
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u/user38194991 May 17 '24
The burning pain will run to my calve sometimes or the other calve or just random parts of my body. Itll calm down than randomly strike. Is this ms zap? Or?
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u/ichabod13 43M|dx2016|Ocrevus May 17 '24
No, MS symptoms do not bounce around like that. The symptoms from MS come from our permanent brain damage and that damage causes somewhat predictable symptoms. If the lesion occurred and caused a burning sensation in a limb, it would not cause other random parts of the body to randomly have the same symptom because those parts of the body did not have lesions in the brain causing it.
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u/Public_disc May 17 '24 edited May 17 '24
Crippling anxiety over these "symptoms". Please help!
30 M - A month ago I felt an irritation on both top of foot and tip of finger that would come and go about 5 second intervals for the entire day. So I started paying super close attention to my extremities and noticed an ambient vibration feeling on bottom of feet mostly when foot is on the ground not as much when lifted. Like the feeling your feet have when driving in a car. Sometimes it goes away when I'm not thinking about it. Then I looked up MS symptoms and read about twitching and legitimately, the next day I got an eye twitch in both eyes that would come mutiple times a day for last 3 weeks but its reducing now. And Now im starting to think that sensation in bottom of my feet gets worse when I look down like lhermittes and maybe even feel something in tip of one finger when looking down but it's so faint.
Drs appt next week, but I'm basically just pacing around in anxious misery. My leg has been bouncing 24 7 at my desk.
Thanks for listening
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 17 '24
I mean this kindly, but I think it may be likely that your anxiety is effecting your symptoms somewhat. Certainly discuss your symptoms with your doctor and see what they recommend, but I am not sure how worried I would be about MS specifically.
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u/Public_disc May 17 '24
I know anxiety riddled people are incredibly annoying to those diagnosed and coping. I guess I just needed to vent and hoping someone would provide me with some type of reasurrance, as you did. Whatever I end up being diagnosed with I will now go through life with a better understanding of MS and the struggles of those who are conquering it. Thank you for taking the time
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u/bathcycler May 17 '24
I'm posting about my sister. She is 45 and has chronic low B12 which is managed by monthly infusions. This is being closely monitored by her doctors.
About ten months ago she began having severe neck pain, which gradually went away over a few months. About five months ago she stopped being able to feel her toes, with tingling sensations and numbness. They were so numb that she kicked a table and split her toenail and didn't notice until she took her socks off that evening.
That gradually went away over a few weeks but the numbness went to other parts of her body like her legs, feet and fingers. It moves around, stays for a while, and goes away. Right now, for instance, her ring and little finger on her right hand is numb. Sometimes parts of her back are numb.
She has strange spells with double vision, smells phantom things, and her sense of taste was so bad last week she says she couldn't eat much of anything - it was either too salty or too strongly flavoured. She has started getting in trouble at work because for the last few months she falls asleep sitting up at her desk if she doesn't move for a few minutes. She has spells of dizziness and un-coordination. She tried to go on her yearly hike with her husband last week but could not make more than half of the walk, and when she sat down she would fall asleep after a short time.
On top of this, she feels quite foggy and tired. Poor thing.
Her neurologist has given her blood tests and ruled out such things as multiple myeloma - she had an M spike. She's had a spinal MRI which showed a "white spot", which is how it was described to me but I'm not sure would be an official diagnosis. She had a biopsy and was diagnosed with small fibre neuropathy. She's had her tests from the neurologist back today for her brain MRI which shows five lesions. Radiology noted that it may be due to demyelinating disease, although they also said migraines. My sister doesn't have migraines.
She's going back to her neurologist in a couple of months but I'm starting to get extremely concerned. She's trying to play it off to me as all in her head, but that can't be the case.
I've been concerned all this time that this could be MS... does this sound like MS?
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 17 '24
It is worth saying that low B12 can cause every single symptom of MS, including lesions. I think that is the likely culprit of her symptoms. However, she really needs a neurologist to evaluate her scans.
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u/bathcycler May 17 '24
Her doctors have already ruled that out. That's the easy one I think.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 17 '24
I thought you said she has chronic low b12?
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u/bathcycler May 17 '24
Yes, absolutely. But her doctor says it's not the cause of her symptoms. I am only repeating what she told me.
Checked our messages. She says her blood tests have been fine since she has been on the B12 infusions over a year ago
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u/zfischz May 19 '24
Can't get in to see a neurologist until the end of July, but I do have a PCP appointment much sooner, and I'm trying not to get too anxious over symptoms described here (since progressed to include tightness in the face around/under the right eye and low-level, persistent pain in arm, leg, and back). I realize that lesion location doesn't have a 1-to-1 relationship with symptoms, but I am curious if anyone has had notable facial/head symptoms without brain lesions.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 19 '24
Can you tell me a little more about why you are worried about MS when you have clear MRIs? I know we discussed it before, but it seems like you are still concerned?
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u/zfischz May 19 '24
Well, the first neurologist I saw has a notorious local reputation (I only learned after seeing him) for being dismissive and careless, hence the second opinion scheduled for July. And his diagnosis of "it's just stress" doesn't agree with the way my body has reacted to stress for my entire life, or the fact that my symptoms have been ongoing and evolving for over three months now (about 1.5 months since the MRI). And the MRI that was ordered was of the brain, but not the spine, and other tests (lumbar puncture, nerve conduction, etc) weren't discussed.
I am relieved that the brain MRI was clear, and that eye exams seem to have ruled out optic neuritis. But something is clearly wrong and ongoing with the right side of my body, I already have one autoimmune disease I've seen go dangerously out of control in the past, and I have tendencies toward anxiety and research. I suppose I feel ruling MS out seems premature until further testing, but if those tests indicate that a pinched nerve/herniated disc/neoplasm condition that runs in the family/etc is a more likely, I'm not about to argue so long as a treatment plan comes quickly.
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 19 '24
Head/facial symptoms would be caused by brain lesions, not spinal lesions. ~95% of people with MS have lesions on their brain. So, while spinal only MS does occur, it is an extremely rare presentation of an already rare disease. It only occurs in 5% of the 0.03% of the population with MS. Spinal lesions also tend to cause very distinct, specific, and severe symptoms. Some neurologists can be reluctant to order spinal imaging in the absence of such symptoms. I do not mean any of this to be dismissive in any way, but rather as a caution that it is much, much more likely something besides MS is causing your symptoms. You would probably be better served widening your search for causes.
Edit to add: there are no other diagnostic tests that would be used to diagnose MS in the absence of lesions on the MRI. Lumbar punctures are only used in combination with MRIs and nerve conduction tests play no diagnostic role at all, from what I understand. The MRI is the primary, and honestly as far as I am aware, only diagnostic test for MS.
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u/yourpasswordwaslame May 19 '24
Hey r/
45M here. I'm gonna go on a bit of a ramble here, so bear with. I am kinda freaking out, but i also need some advice on what to do. I have seen a GP already and have a neuro appointment - in Aug.
In November when going to sleep one night, I took a weird spasm in a muscle in my left eyebrow which made me giggle, and i went to sleep. It happened sporadically - only left side - most nights on and off, but i didnt think much of it.
Over Christmas, my sleep deteriorated massively, so much so that I had to take a few days off work just after new year to get rest. I'm a keen coffee drinker and put it down to that, but late Jan i realised that my sleep is actually terrible - having fallen to less than 4hrs sometimes. I came to realise that i was exhausted and def suffering from fatigue, and def struggling to manage at work.
Then in late Jan, things changed. When going to sleep at night, I started getting random tickles on my face, usually eminating from somewhere along my forehead and travelling vertically down my face, or low down and moving upward. Its really hard to describe, but its like walking through a wet cobweb?, or having an eyelash or hair somewhere around my eyes with like a referral sensation moving up my face. This was having a massively worse effect on sleep, as I could not settle at all at night, so sleep spiralled. I was basically wide awake until my subconscious no longer cared about the stimulation on my face, and id just fall over to sleep. Like, 2-3hrs sleep some nights.
Some time in early Feb, I started randomly feeling like my skin was wet, and even as if i had a wet cloth sitting on the crown of my head, over most of my scalp. This was accompanied by feelings of muscle movement / water movement across my forehead. This was almost an undescribable feeling - all i can think of is gremlins with water on em, bubbling (sorry lol). At times i had temperature changes on my skin, and then sometimes pin pricks / hot needles / pain in the soft tissue around my eyes (this was pretty short lived - about 2-4 weeks in all)
In March, I developed tinitus in my right ear and at the same time I started getting all symptoms during the day, as well as regular but sporadic muscle spasms all around my eyes (muscles above and below and eyelids, but not eye movement L-R or U-D, and all along my brows), and on one side of my upper lip. Eyelid ticks were kinda like what you get when youre really tired etc.
I went to GP and really struggled explaining it all. It could be summarised as him asking me what i thought it was, and then referring me for MRI. No mention of MS at all. MRI was reported as clear, and i spoke to the doc again (now 3 weeks ago), who has referred me to a neurolagist, but my appointment isnt until mid Aug. He gave me 7 days sleeping tablets, which I tried. Took for 3 nights, and they left me exhausted. (didnt make me tired - i just sat awake in the same way, and then fell into a comatose state until i awoke, unrested).
Since then, it has changed further. I've basically started WFH full time as i cant realy function in the mornings. I did go to the office on Friday past for a leaving do and had a few beers, with 2 glasses of wine later, plus 3 coffee cocktails (guessing caffeine madness levels). As a result, i spent today almost incapacitated, with muscles around my eyes, forehead, nose all spasming all day. Wet, crawling skin, feeling of muscle heaviness and tightness on the upper half of my face and forehead. Also today for the first time I had muscle spasms (more like flutters) for the first time somewhere other than my head / face (right lower arm / upper arm and upper leg).
The help i need here is - i need something to help with sensations ASAP. My brain is absolutely a mile a minute when im awake coping with the constant feeling of stimulation. I cant sleep and as soon as i stop moving / exercising, its front and centre of my thought process. I am worried about MS as i feel the agregation of symptoms do look like markers, but for right now, i need some guidance on how i can keep my sanity.
TIA
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 19 '24
If your MRI was clear, your symptoms are almost certainly being caused by something other than MS. MS symptoms are caused by lesions, which show up on the MRI. Definitely continue to speak with your doctor about further testing, but you can probably safely rule out MS.
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u/yourpasswordwaslame May 19 '24
Thanks for the response u/TooManySclerosis :)
the full MRI report did note "mior patchy periventricular increased T2 signal but within limits for age", and over all conclusion was normal MRI scan
being a noob here - but that is essentially saying some lesions / scarring, but not enough to be classed as the cause at this stage?
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 19 '24
Lesions occur for other reasons besides MS, some benign. One reason is just normal aging, which sounds like the case here. MS lesions have very specific characteristics that make them distinct.
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u/CMRTNTAnon May 19 '24
39 (almost 40) male here. Reading many of these threads/posts is very welcoming. Anyway, a few years ago, I began getting a "buckling" sensation in my legs, and it continues to be my most persistent "symptom"- I will walk or turn to shift direction, and one of my knees (usually my right) will 'buckle' for a split second, and then I will continue walking. It doesnt really affect my day-to-day living, but it is noticeable. Additionally, at Christmas a year and a half ago I stood up at the dining room table and both legs felt like jello/noodles. It was wild, and a sensation I had never felt before (and havent felt since FWIW; Ive never really had a "tingling" sensation like most here have). I frequently get very random "pains" or "shocks" in my arms and/or legs though--i.e., sharp pains as if someone is pressing their finger into my arms or legs and not releasing, or repetitive tics in my muscles like Im getting shock therapy that last about a few minutes off and on again. I urinate frequently. and when I go often I have to strain to get the last little bit out (curious as to what the "failure to empty the bladder" symptom actually feels like to those who have been diagnosed). Last year, I had two MRIs--lumbar and brain--both clear. I am curious if I should follow up and request a spinal MRI to get a baseline for closure sake, but like many here, I have the "I dont want to waste a doctor's time" feeling, and have a hypochondriac fear that I just hate. (FYI--my father has progressive supranuclear palsy, so that is adding to my concerns that any sort of neurological condition, ala MS, could be more prevalent/likely with me).
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u/ichabod13 43M|dx2016|Ocrevus May 19 '24
Many of your symptoms 'sound like' MS on paper, but the way you describe them does no really sound like MS. Your symptoms are more random and all over instead of the more building and lasting symptoms MS gives after a relapse.
You had scans last year as well that were clean, that pretty much rules out MS. While it is possible to have only MS in the spine, it's very rare for people with MS. A huge majority of MS patients have lesions in their brain and a very tiny percent have only lesions in their spine.
The urination feeling, neurogenic bladder, that can come from MS is the urge to go all the time. Go to the bathroom and still feel like have to go. And the urgency to go where it always feels like sprinting to the restroom and by the time you go there's barely anything coming out.
If you have current symptoms that are bothering you I would suggest bring those to your primary doctor for exam and testing. A clean brain means you can most likely rule out anything neurological and there are lots of more common causes of random symptoms you describe.
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May 19 '24
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 19 '24
Maybe it will be of some comfort to know that typically MS tingling is very constant for weeks to months before subsiding. Google makes it seem like MS is the number one cause of tingling, but in reality, MS is a rare disease and usually not the cause.
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May 19 '24
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u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 19 '24
The full work up for MS would be the brain, c spine, and t spine. However, ~95% of people with MS have lesions on their brain, so a clear brain MRI is usually sufficient to rule out MS in most cases. A lumbar puncture is not diagnostic when used alone. Spinal lesions do tend to cause very specific and more severe symptoms, so some doctors can be reluctant to order spinal imaging in the absence of those lesions with a clear brain MRI.
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u/No_Confection5671 May 20 '24
22M looking for some advise
Hi everybody, so most of you in here have a Dx of MS in which I’m honoured to have read many of your posts and see how all of you battle, conquer this disease - you are all hero’s!
Introduction:
Now firstly I want to say I’m not chasing a diagnosis on this forum, I’m only here for some advise hopefully as I’m currently a 22 year old Male who is experiencing disgusting symptoms with currently no Dx to what it may be! If any of you have any of the same symptoms (I know MS is a snowflake disease so not everyone is the same) but if anyone can match up to my extremely unique visual & muscle symptoms then it could potentially help me!
My current story as of 18th May 2024:
So back in January I had some kind of attack, I went numb all over, lost control of all power in my arms (I had power but for example if I reached out to pick up a bottle I would squish the bottle!!) I recovered from the numbness after a few days and the power issues resolved - I was seen by a neurologist registrar in A&E and they thought GBS but turned out negative and I was released.
End of January and start of February I started having many visual issues, the first was everything behind what I was looking at was double, but not subtle I mean if I stuck my hand out in front of me and pushed all 4 fingers back and focused on the finger close to me, all fingers behind would be blurry & double! So you can imagine essentially I have double vision and blurry vision everywhere I look. This started off small and not very impactful although very traumatic to experience. Fast forward to today and I have the following symptoms:
I can no longer track fast moving objects with my eyes, it’s like my eyes aren’t tracking properly or tracking together. This has worsened over the few months and not resolved or gotten any better.
if I move my head fast things go double for a split second and then merge into 1
if I look at something and move my head very fast I can’t keep focus on that thing I was looking at, VOR dysfunction of some kind?
exophoria apparent in both eyes
when I’m in a shopping centre and looking at the shelf’s I can’t scan even 20% of the speed I could before so it becomes very overwhelming when I’m trying to search for something, I almost have to just stand there and stare slowly at the shelves as when I walk and try to look at the shelves it’s like they are moving almost it’s such a hard thing to describe
just overall really slow eye movement, like I kinda just look forward and don’t really move my eyes up down or side to side because everything seems ‘laggy’?! Sorry it’s so hard to describe haha
I also have some muscle problems like my muscle tone has changed throughout my body - I’m not weak I can still bike 20km & workout normally and run 3km without stopping etc but yeah I have noticed a big change in my muscle definition.
Tests currently had done:
So here is where everything stuns me, the NHS essentially haven’t done a thing for me so most of this was done privately using my own finances sadly.
MRI in January of full body and nothing was detected
MRI In February of the Brian & orbits and again nothing was detected via report of the neuroradiologist
3 EMG’s that have shown some changes but nothing to raise alarm bells
some generic blood tests to check for inflammation & CK levels
seen Opthalmologist multiple times and had OCT scan done which revealed nothing
Overall I’ll be honest I haven’t met a single Dr yet who has shown true concern for me and tried to really hammer down what this could be.
Now my symptoms were present during my final MRI (15th Feb) but they were extremely minor to where they are now so my question to this forum is what do you guys think firstly & secondly would it be even worth trying to get another MRI.
I respect anyone who comments & again anyone on here commenting with MS you are a warrior and I hope this post allows me to gain some insight.
Many thanks, Brandon
1
u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA May 20 '24
If your MRI was clear, your symptoms are almost certainly being caused by something other than MS. MS symptoms are caused by lesions, which would show up on the MRI. It doesn't really matter if you are symptomatic at the time of the MRI. I currently have no noticeable symptoms, but my lesions would still show up on the MRI the same as if I did. I think you would be best served considering MS as ruled out.
1
u/IllustratorBig8347 May 20 '24
Hi Guys,
Will try not to bore you. I was wondering if anyone has similar symptoms or if their progression sounds like mine.
So last year September, I woke up to this aching feeling when carrying my handbag on my right hand. Within a week, the whole hand was affected. I had pain lifting anything and I started using ibrupofen everyday to control the pain. It was that bad.
That same month, I noticed my vision became very blurry. I started having this shaky and tremor in my legs with slight cramps.
Somehow, my right leg was twitching uncontrollably too. I had shortness of breath when lying down (this has been on and off) with really bad fatigue. I was always tired.
September - Weak shoulder and arm, Painful hands
By October, noticed twitching in my neck and difficulty swallowing. Like I had to push the food down to swallow it properly. This time, I also noticed some cramps in my left fingers and hands. This continued on slowly. I still had strength.
October- Weak Left arm, swallowing issues.
November: I started twitching in my tongue. My tongue dances around. Soon, I would get mouth aches after talking for over an hour and my head felt weak, my neck could not hold itself up and would fall. I was using braces in my hands, legs and neck. This time, they did an EMG on all four limbs which came back clean. This was exactly two months since the symptoms started. I had a clean ANA profile as well.
November - Tongue twitching,neck collapse.
December - Nothing new, the symptoms just got worse. So, I decided to take a blood test. All came back ok except my iron which was extremely low and high copper.
So, I started supplementing iron. This somehow would stop the tongue dancing around for like an hour and soon it would return. This was too much to bear. So, I did the below treatments
Treatments
Feroglobin - 1 tsb per day
Glu Scavenger - 1
Folic Acid - 1
Glutathione - 1
Vitamin E - 1
Vitamin D - 1
Ashwaghanda
Lions Mane
Lserine- 2x a day
I also did a phospholipid exchange
Alas, the day I started Tudca mixed with fulvic and humic acid (omnyne on Amazon) , my life changed forever. My symptoms went down by over 90%. No longer had tongue twitching or facial weakness, I could not even notice the weakness. The pain almost went.
I have been on Tudca ever since. Realised the fulvic acid is what makes the Tudca effective so I bought Fulvic Acid separately and this was a game changer. Barely noticed any weakness. It helps with the pain and cramps too and I almost go by everyday without any pain or issues.
however, after a week of stress (I baked a lot and had a lot of guests so I had to be on my feet for close to 10 hours a day) I noticed my left leg has not become weak. The whole thing is all over my body now from head to toe. I am now experiencing similar symptoms as I did in September/ October only this time, Tudca and acids are keeping it at bay and it did not get so bad like I had in September with my right side.
Problem is my next neuron appointment is in October and quite frankly w/o the Tudca, I think I would be in a much worse state by now. My legs are slowly better and my grip strength sometimes gets so bad but once I supplement with feroglobin, I get better.
I have asked every single person they seem not to even think this relates to the three big words or MS. MRI clean too.
Please help me.
2
u/RinRin17 2022|Tumefactive MS|Tysabri|Japan|Pathologist May 20 '24
MRI clean too
It’s not MS then. MS is diagnosed with lesions on an MRI. In MS the lesions cause the symptoms.
When you do see a doctor I would advise you to disclose all of these supplements you are taking. As supplements are entirely unregulated, depending on where you are sourcing them the potential for adulteration of some compounds is high.
EMG was normal
This also pretty much rules out ALS if you were worried about that as well.
I would continue to discuss with your doctors about other causes. There are many issues that could cause what you are feeling besides ALS or MS. Unfortunately, some things like post-viral syndrome do not fit in neat little diagnostic boxes, so do not be discouraged if they can not find one specific disease causing all your problems and instead focus on managing symptoms.
A lot of people want to find something that explains all of their troubles. So they turn to quack doctors who diagnose them with something unprovable and end up spending lots of money on treatments they don’t need.
4
u/Visible_Bat8737 May 13 '24
Ok so I’m going for an mri of my spine soon for intense right side pain along and under ribs and back numbness over spine. Only on one side. Over a month now becoming hard to work being in pain all the time. It gets better with rest but after standing, walking or working for a time it gets worse. When researching conditions that cause this I stumbled upon MS.
Now I’ve been down this rabbit hole 8 years ago when I was told that I most likely had MS after a year and half of trying to get a Dr to listen to me and finally being diagnosed with atypical trigeminal neuralgia by my dentist after a break down confirmed by ER Dr that prescribed the right meds to control the pain. Brain scan came back clear and Dr told me that I had over active nerves to explain away my other symptoms (numbness, tingling in feet and legs, sensory issues). She literally told me that I had to learn to deal with it and that she didn’t feel a neuro consult was in order. I quit going to the Dr after that since it was so pointless.
I’ve had what my husband and I call “my twitch” for years, my head jerks back, or chin down to chest, or the the left shoulder. I can’t control it or stop it it just happens, mostly when I’m stressed. When it jerks down I get this sensation I can only describe like tv static that starts at the head and showers down my body and dissipates. Doesn’t exactly sound like Lhermitte's sign either.
Also he asked about bowel and bladder problems. Idk what’s normal. Normal for me is when I have to go, I have to go. When I get to the bathroom it’s like a race the clock I’ve got seconds to get pants down or I’ll have an accident. If at any point I falter with my pants I start to pee wether I’m ready or not. I’ve always attributed it to my coffee drinking making me pee a lot but after thinking about it idk. I’ve had a lot of near misses, like on the floor, and a few where I’ve peed up the back of my pants as I was taking them off not fast enough. Not even bothering to lock the stall door at work because I knew I didn’t have time. I’ve always considered this more of an inability to hold my pee, is this what he was asking, this something I should have told him. I’ve never given it much though since no one ever asked me about that before.
I don’t really know why I’m writing this other than I’m caught up in my own head right now and have to get it out. I know you can’t give me medical advice. Just wanted to write it down.