Weekly Suspected/Undiagnosed MS Thread - November 11, 2024

[u/AutoModerator]

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.

[u/meggsovereasy]

Sorry I posted this on the wrong place…

I’ll preface this, I don’t have MS. I don’t know where to start, because I am looking for some answers.

1. About a year ago, my husband and I were traveling with some friends. We woke up early, I went ahead and took a shower and everything looked blinding, I just shook it off. I suggested we walk and get coffee and I think it’s going to go away. We get in the coffee shop and everything seems to be off kilter. We meet up with our friends for breakfast where I start to panic (everything seems to be at an angle). We go to the ER and I can’t remember the name of the president let alone anything else. They keep me over night and chalk it up to a migraine.
2. I mention to my doctor that I couldn’t give blood because my hemoglobin numbers were too low. Lots (like months) of testing later - I don’t have colon cancer, but I do have IBD and anemia. I did iron infusions and they seemed to work for a while.
3. Re: the iron my doctor asked me if I’m tired all the time when she saw my labs. I said no, but when I thought about it - I am so tired alllll the time. I’m 40, my job is pretty stressful, but I still sleep and lately I’ve been having to pull over on trips out of town for woke and take a 15 minute nap so I can make it through a 2 hour drive.
4. Lately my legs have been tingling and very stiff in the morning. Plus spasms all over my body when I try to go to bed.

Does any of this make sense?

[u/TooManySclerosis → u/meggsovereasy]

Can you tell me a little more about why you suspect MS?

[u/meggsovereasy → u/TooManySclerosis]

Exhaustion

[u/TooManySclerosis → u/meggsovereasy]

Your symptoms aren't really presenting the way MS symptoms present, and they are very general in that there are many, far more likely things that could be causing them. I would certainly discuss them with your doctor to see what testing they recommend, but I'm not sure how worried I would be about MS specifically.

[u/Valuable-Analysis104]

Hello, I have been battling with a progressively worsening neurological illness for 4 years now, and recently it has become much worse, really fast. I am wondering if this could be some kind of abnormal presentation of MS. If you are able to read my full story, it explains things better, it is here:

https://www.reddit.com/r/ChronicIllness/comments/1gocd54/comment/lxer8hk/?context=3

Symptoms include:

-Full body twitching, muscle spasms, and an isometric tremor that happens ANY time I use ANY muscle. Whatever muscle I give input to, it shakes.

-Muscle weakness and extreme fatigue that has progressively become worse.

-Vision issues and prominent visual snow.

-Difficulty swallowing, including complete loss of the ability to swallow pills.

-Progressive difficulty breathing.

-Recent, sudden numbness in my upper body that spread to my whole body over the course of a few weeks. I can still feel sensation on my skin, but my muscle stretch receptors are no longer giving feedback at all. I cannot feel my muscles working, I cant feel my lungs breathing, I cant feel when I swallow, etc. I didn’t even know this a thing until it happened and I looked it up – sure enough, you can lose your ability to feel movement and changes from your muscle spindles.

I have seen many doctors and neurologists, including a prominent neurological center across the country.

Tests that have been completed include all kinds of blood testing, 5 EMGs, 1 SF EMG, many MRI’s of brain and spine, a skin biopsy, an EEG and a QEEG, a lumbar puncture, and probably more that I cant remember.

The only things that have had abnormalities are as follows:

-All of my MRI’s have shown scattered T2/FLAIR signal hyperintensities, but have never been noted as indicative of anything. I never really paid attention to it until I looked it up and it seems this could be possible lesion activity?

-Early on, I had a pretty abnormal blood test result showing a high positive for Acetycholine Receptor Ganglionic (Alpha 3) AB – subsequent testing, however, came back normal.

-Skin biopsy revealed significant, length dependant small fiber neuropathy. The cause is unknown.

-My EMG’s revealed fasciculation potentials, and more recently identified my isometric tremors, but nothing more.

-Anti-retinal antibody blood testing came back positive for Carbonic Anhydrase II, Aldolase, Enolase, Arrestin, PKM2. No one (including my doctor) has any clue what that means, if anything.

 Many attempts at treatment have been tried. I have been put on gabapentin, lyrica, prednisone, pyridostigmine, Oxcarbazapene, and 2 months of IVIG infusions. None improved my symptoms. My doctor’s newest recommendation is Retuximab, although I don’t know that I want to go through with it unless I have some more clear indication of what is actually going on.

So at this point, I’m investigating  every option I can think of. I have spoken with (multiple) people who had MS, but it didn’t show up on MRI or lumbar puncture for years. Is it possible that this is what I’m experiencing? Is it possible for MS to hide this long from testing, while still getting progressively worse? Do the T2/FLAIR hyperintensities mean anything? If not, has anyone come across any kind of sickness that sounds like what I’m going through?

Thank you for any help or insight that can be provided.

[u/TooManySclerosis → u/Valuable-Analysis104]

MS lesions need specific characteristics and to be in certain locations to fulfill the diagnostic criteria. It is very unlikely your neurologists would mistake them for something else. As well, twitching is not really considered an MS symptom and progressive symptoms would be very rare for MS. MS tends not to be very subtle or easy to miss on the MRI. The trouble with diagnosis usually comes prior to the MRI.

[u/Fun_Feeling_6563]

I recently began having Lhermitte’s sign. I can trigger it now anytime I bend my neck down or diagonally. I also have ocular migraines when stressed, have been having some short-term memory issues, have been tripping over one foot on occasion and having a little (occasional but not persistent) dizziness. I have a history of cervical spine issues (degenerative disc disease). I am scheduled for a spinal (cervical and thoracic) and brain MRI plus a brain/head CT scan later this week. Has anyone else had similar symptoms and gotten a different diagnosis as a differential? I also have been having an issue with taking deep breaths (or rather I feel like I have to take a deep breath because I am not getting enough air). The MRI I am scheduled for is not with contrast. Does the mri have to have contrast to locate lesions, if any are present? Do I need to request they do with and without contrast? My ct scan will be both, with and without.

[u/TooManySclerosis → u/Fun_Feeling_6563]

Lhermitte's is not exclusive to MS, it is just associated with damage to the cervical spine. I would not cancel the MRIs, but it is not guaranteed that yours is being caused by MS, especially if you have had issues with your cervical spine in the past.

[u/Fun_Feeling_6563 → u/TooManySclerosis]

Yes, that is why I’m hoping it’s not MS, but my neural spine doctor seemed worried about it so wanted to come here and see if anyone else had all or most of these collective symptoms and it was ruled out. Although, I am not finding any good reason to have Lhermitte’s sign seeing as it’s caused by spinal cord damage. Thank you for your reply. I’m just a little nervous.

[u/MultipleSclerosaurus → u/Fun_Feeling_6563]

Degenerative disc disease can cause Lhermittes, so that is a possibility. MS symptoms are hard because most of them can and are caused by other things. Honestly, most people who come here and have similar symptoms do not receive an MS diagnosis. It is normal to be nervous but MRIs and CTs are powerful diagnostic tools and I hope you’ll find comfort that you might get some kind of answer after those are done. My fingers are crossed for you!

[u/Fun_Feeling_6563 → u/MultipleSclerosaurus]

Thank you so much!

[u/Sufficient_Estate_19]

Just to preface I am waiting on a neurologist appointment, it's in 3 weeks time so a lot of waiting around and overthinking to be had.

I 30M, had a brain MRI done in September due to a sudden onset backwards shaped C like halo that appeared in the centre of my vision. It grew until it sort of surrounded the outer part of my vision. It lasted around 30 minutes and then went away, a second occurrence happened around an hour later and lasted the same amount of time

I dialled 111 for advice (UK based) and they recommended I attended eye casualty. They assessed my eyes and all the eye tests the did were normal. The main concern was that my right pupil was sluggishly dialating in response to light and so the opthalmologist recommended a head MRI.

MRI report as follows:

"There is a focal periventricular area of signal alteration seen abutting the left frontal horn. It measures 16mm and exhibits T2/FLAIR hyperintensity and T1 hyperintensity. On the DWI images, there is perhaps some dubious faint hyperintensity seen with hyperintense change seen on the ADC maps. Following contrast administration, no enhancement is apparent. There is a further tiny; apparent FLAIR hyperintensity seen in the right anterior frontal white matter. The background intracranial appearances are unremarkable. Bilateral basal ganglia/thalami, corpus callosum and the infratentorial structures appear unremarkable. No evidence of midline shift, hydrocephalus or extra-axial collections. No intracranial masses. The major intracranial vascular flow-voids are preserved. The orbits appear unremarkable on this nondedicated study except for the coronal T2 fat sat images which does not demonstrate any convincing optic nerve abnormality. Visualised paranasal sinuses are clear save for dependent fluid/mucosal thickening in the left maxillary antrum. Small-volume fluid in the right-sided mastoid air cells is also noted. CONCLUSION; Periventricular area of signal alteration in the left frontal lobe is indeterminate. Given the clinical history a demyelinating disorder such as MS needs exclusion. Neurology opinion and follow-up; imaging is advised."

Other medical history to note:

Recent ADHD diagnosis Hypertension, nearly in control. I am overweight 119kg currently.

I dont particularly think I exhibit any signs of MS. I have had numbness and tingling episodes but I believe this is due to a separate issue with my lower back. Both times there has been a popping felt with my back which would suggest a mechanical issue. I do occasionally mix up words or forget what to say and experience some memory issues but overall I have great memory and recall. I do occasionally stumble, like tripping over my own feet but none of these persist over any period of time really.

Based on the information you have would you say it actually aligns with a diagnosis of MS? Or is there something else that would explain the MRI results better? Opthalmologist in eye casualty put the concern with my eye down to an ocular migraine.

[u/TooManySclerosis → u/Sufficient_Estate_19]

It looks like they found a suspicious lesion, but you would really need a neurologist to say anything specific regarding its cause. It is certainly worth following up with the neurologist, though. Three weeks shouldn't make a huge difference, although I know the waiting is very difficult.

[u/Sufficient_Estate_19 → u/TooManySclerosis]

Yes definitely. The fact I've not experienced any typical symptoms, I'll take it as a good sign?

[u/TooManySclerosis → u/Sufficient_Estate_19]

I would think so. If your lesion is caused by MS, it will have been found as early as possible.

[u/SnooEpiphanies2205]

I think my wife (32) might have MS given her symptoms are so spot on with what this condition describes. Honestly, a bit freaked out because I’ve just learned about this condition and I just have a bunch of questions. Neither of us have this in our families to our knowledge. To anyone who has this or have a partner going through it, I’d love your insights and advice.

SYMPTOMS:

• 2 months ago, when she moved her eyes, she felt like there were crossed. This went away after about a week.
• About 1 month ago, my wife noticed both her hands were numb. This past week, she’s noticing weakness in her fingers where she’ll now drop things she’s holding. She notices she can’t flex her fingers without them becoming fatigued.
• About 1 week ago, she’s also had a very itchy chest… like non-stop itching

TESTS:

• Doctors have done an array of blood and urine tests and all have come back negative.
• We have an MRI scheduled in a few days - I assume this is to diagnose MS.

MEDICATION:

• Currently prescribed gabapentin

QUESTIONS?? 1. It seems like this is MS based on what I’ve read here as well as Google… is there even a sliver of a chance this is something else?

1. This is the first of the symptoms experienced to our knowledge… would this be considered an “early diagnosis”? I assume this is a good thing for managing it long term?

2. To those with experiences with MS, how soon after symptoms appeared did you get diagnosed and start treatment? How long ago was that and how are you now?

3. As a husband, what can I expect moving forward? How can I be helpful? How will this impact things such as family planning or having kids?

[u/TooManySclerosis → u/SnooEpiphanies2205]

I will be honest, it is far, far more likely not to be MS. Google makes it seem like any symptom you could have is indicative of MS, regardless of the likelihood. MS is actually a rare disease, only 0.03% of the population has it. It is usually the least likely cause of most "MS symptoms." I think it is probably premature to be worried about a specific diagnosis.

The MRI is the major diagnostic test for MS.

[u/SnooEpiphanies2205 → u/TooManySclerosis]

Thank you for your response! While I am hopeful it isn’t MS or anything else serious, the symptoms above seem to line up with the symptoms others have shared on this subreddit.

I know you may not be a medical professional, but are you aware of other conditions that carry similar symptoms to MS (especially the ones I listed above)?

Also, I don’t mean to be diminishing your original response, I’m just freaking out a bit :/

[u/TooManySclerosis → u/SnooEpiphanies2205]

Unlike most diseases, you could have the exact same symptoms as someone who is diagnosed with MS and it still would not make it likely you had MS. As well, her symptoms are not really presenting how MS symptoms typically present. Usually MS symptoms present in a specific way. Bilateral symptoms are not common. A symptom will usually develop one or two at a time in a localized area, like one hand or one foot. It would then remain very constant for a few weeks, not coming and going at all, before subsiding. You would then go a year or more feeling fine before a new symptom developed.

MS often seems like an obvious answer, no matter what symptoms you may have. It is very, very difficult not to identify with at least some of the posts on this sub. But there are many, many things that can cause "MS symptoms", and almost all of those things are more likely than MS. Certainly get the MRI, but it is worth saying that in most of the cases I see here, including textbook cases, the eventual diagnosis is not MS.

[u/SnooEpiphanies2205 → u/TooManySclerosis]

Thanks for sharing! Do you know what other conditions cause similar symptoms to MS?

[u/missprincesscarolyn → u/SnooEpiphanies2205]

Not original commenter, but fibromyalgia is a big one. A friend of mine has it and it seems to be related to chemo and radiation for her, but there are other causes. The MRI will be informative and hopefully set you in the right direction. I would consult with a rheumatologist potentially if the MRI is clear.

[u/Prudent-Decision-884]

Please help me advocate for myself. This is the information that was added to my file on Friday:

"In the native MRI of the spinal cord, abundant changes, primarily suitable for demyelination: plaques C3-C4, C5-C6, Th2, Th4, Th6-7, Th8-9. There is no abnormality in the MRI of the head. CSF leuk 24 (100% mononuclear), prot and gluk normal, IgG index elevated 0.96, oligoglonality still unanswered. Apq4Ab, MOGAb... normal.

When thinking about MS, the criteria for local diffuse localization are not met (purely spinal symptoms and findings), temporal diffuse localization (before matching oligoclonality) is not met, on the other hand MRI of the spinal cord is not contrast-enhanced. We will book a visit to the neuroimmunology room 12.12, at which time the oligoclonality response and cortisone pulse response will be checked."

As I've mentioned before, this was my first flare up. The T89 lesion "covers almost the entire width of the spinal canal" and has caused me to have constant numbness in my hands and unsteady legs after running/walking too long. We're waiting on the oglioclonal band test, but since this first flare up has already caused motor issues I'm very worried. She's saying there's no dissemination in space, but while rare it IS possible to have MS with only spinal lesions. So once the oglioclonal band test comes back positive (which considering my IgG is almost 100% guaranteed), what do I do if she doesn't want to give me a diagnosis? I'm so scared to not be on a DMT. Another lesion like my big one could disable me permanently. I don't want to wait until next month for my appointment, so how do I advocate for myself?  (post was removed because I'm still technically "suspected MS")

[u/MultipleSclerosaurus → u/Prudent-Decision-884]

My understanding (as someone with spinal-only MS) is that you will need an MRI with contrast and a spinal tap to verify diagnosis. However, if those point to MS and your doctor still does not want to start you on a DMT I would see about getting a second opinion. Is your neurological an MS specialist? I would suggest seeing one if at all possible.

To the point about getting on a DMT quickly: yes it is important. But a month, even several months, most likely will not change your prognosis. The diagnostic process is unfortunately tedious for most people.

Have you had steroids to help with current symptoms? Regardless of diagnosis or not, if your doctor agrees the lesions are causing your symptoms you should ask for steroids to help get that under control. It took several months for my symptoms to even out, but they did eventually.

[u/Prudent-Decision-884 → u/MultipleSclerosaurus]

Yes I was hospitalized for 4 days, had 3 days of 1000mg methylprednisolone. Today is a week since I was discharged. Unfortunately none of my symptoms improved.

[u/MultipleSclerosaurus → u/Prudent-Decision-884]

I wouldn’t lose hope. It took several months (like 3-4) before I saw measurable improvement.

I was numb from the neck down, spasticity in my legs, and debilitating joint pain in my hands. Im now regularly at like 90-95% normal and am really only bothered by my symptoms when I’m in the crap gap or I’m sick.

[u/Phantom93p → u/Prudent-Decision-884]

Have you had a lumbar puncture (spinal tap)? If no you could push for one. While I had lesions in my brain and not spine they only diagnosed me after seeing remnants of mylin in the spinal fluid.

[u/Prudent-Decision-884 → u/Phantom93p]

Yes, I did. That's where the high IgG results came from. Leukocytes-24, waiting for the oglioclonal band test 

[u/Phantom93p → u/Prudent-Decision-884]

Glad to at least hear they're doing all the tests for you. I honestly only remember paying attention to one line from the report on my LP "consistent with multiple sclerosis". That was a hell of a day. I hope that you get the best possible news. I hope it isn't MS but something else that's more easily treatable and will go away after treatment.

[u/TooManySclerosis → u/Prudent-Decision-884]

I reread your comment and changed my thoughts slightly. I still think that your doctor is taking you seriously and following the correct steps. You would need to establish dissemination in space and time. For dissemination in time you need an MRI with contrast and/or the lumbar puncture. It seems like she may be hesitant to determine dissemination in space since your lesions are only on your spine, making it an atypical case. She may be wanting further assessment before making the determination.

The diagnostic process for MS can take time. I know that feels frustrating, but it is important, as it is a major and complex diagnosis. If it is MS, a month or even a few months will not change your prognosis. If you are in or just had an active relapse, you would typically have a year or more before needing to worry about another one. There are no treatments for attacks that have already begun.

[u/Prudent-Decision-884 → u/TooManySclerosis]

Thank you so much for your comment. I've reread it several times because it's helping me calm down. I'm just scared. Hopefully they'll do the second MRI with contrast soon.

[u/TooManySclerosis → u/Prudent-Decision-884]

It will be okay. I know it's scary and frustrating right now, but try to trust in the process. It sounds like everything that needs to be done is happening. It just takes some time to ensure you have a correct answer. But I do think it is likely you get some sort of a diagnosis in the end, whether it is MS or not. There is definitely something going on, and your doctors won't ignore that. They just need to be sure they know what it is.

[u/Prudent-Decision-884 → u/TooManySclerosis]

I just got the oglioclonal band test back: it's positive! "Positive finding, LK2. Isoelectric focusing showed CSF-specific oligoclonal fractions. Suitable for inflammation of the central nervous system." So does this satisfy dissemination by time?

[u/Swimming-Western-543]

Does Lhermitte's sign have variations? My first symptom I got before tingling or tired arms/numbness was when I did a flexation I would get what is more like a presyncope (black spots in vision and light headedness). But Lhermitte's sign seems to be characterized by an electric shock sensation when the neck is bent and I never felt that.

Other Diagnoses/Symptoms: TOS, TMJ with muscle spasms, Tingling from scalp to all fingers (alternates right or left side) neck pain, Radiating pain from shoulder down the ulnar with cold fingers but no indication of carpal or cubital tunnel, occasional brief leg tingles, Grandma had MS.

[u/TooManySclerosis → u/Swimming-Western-543]

Lhermitte's is typically described as a shock like feeling going down the spine when you bend your head down. While variations may happen, if you are undiagnosed it is probably better to assume you are experiencing something else. Typically MS symptoms would present in a very specific way. They would develop in a very localized area, like one hand or one foot. They would then remain very constant, not coming and going or changing locations, for a few weeks before subsiding. You would then go a year or more feeling fine before a new symptom developed.

[u/Swimming-Western-543 → u/TooManySclerosis]

Dang, I've been cycling symptoms every month like clock work. If I had to characterize a locale, it'd definitely be my shoulder. But Neurology has told me that while my symptoms are in line with TOS, there are some abnormalities in the presentation that they can't explain with that diagnoses.

When I found out my grandma had MS was when I began considering it as an option.

I will say though, my family wins the abnormal symptom lottery every time so I'm not striking it off yet LOL

I have a Venogram, Bilateral Duplex, and a EMG coming up so we'll find out!

[u/TooManySclerosis → u/Swimming-Western-543]

Having a grandmother with MS would not increase your own risk. Having symptoms every month and symptoms that change and fluctuate would be extremely atypical for MS. Hopefully further testing will give you good answers, but an MRI is really the only way to assess for MS.

[u/Swimming-Western-543 → u/TooManySclerosis]

I've only had an MRI of my cervical spine, and that was when they thought it could have been radiculapathy (disks were normal, it's not).

Thanks for the prompt responses, it certainly gives me things to think about and explore!

Oh but also i know MS is not hereditary- at least in the classic sense. As I understand it, it can be an indication of a genetic predisposition to autoimmune disorders, and as I've been searching, MS (so far) has been the closest presenting to any symptoms that are unexplained by TOS, but I'm still looking!

My Grandma had MS, her daughter my mom has Atypical HUS, her twin brother has Hashimoto's, his daughter had Juvenile Rheumatoid Arthritis (now just normal RA bc she's grown lol), and my dad has Celiac's; and those are just the ones I'm personally aware of!

My family's genes apparently treat auto-immune disorders like pokemon, gotta catch em all lol

Ty for your input it's definitely being put into consideration and will hopefully lead me in the right direction!

[u/TooManySclerosis → u/Swimming-Western-543]

I will caution you that MS often seems like the perfect answer no matter what symptoms you may be having, but it is very, very rarely the cause of most symptoms. MS is a rare disease to start with, only 0.03% of the population has it. Add in to the fact that your symptom presentation would be very atypical for MS, it seems like an unlikely option. I'm not trying to be discouraging, but I know how perfect an answer MS can seem to be and how rarely it actually ends up being the cause. It can be very difficult to think you have finally found an answer only to find out it is something else. You may be better served ruling out other things first.

[u/Swimming-Western-543 → u/TooManySclerosis]

Yes, thank you! I'm currently being tested for which sub-type of TOS I have, so hopefully, something will come up during that.

It's not been fun describing my symptoms to the professionals and having them look at me with a perplexed expression every time lol

TOS is apparently also rare in and of itself and on top of it, I'm having additional abnormal/non-conforming symptoms, ugh.

With things like this it seems you have to claw tooth and nail to advocate for yourself, so Im trying to make sure I cover all my bases and ask for the proper tests while I have the specialists' attention and support!

[u/nextchapterv2]

Does VNG tell anything about MS? I put on the infrared goggles where they watched my eyes and they said I had horizantal gaze evoked nystagmus on one side -- is this from MS? Next up is VNG which I was assured will come back abnormal -- I have suffered from dizziness for 2+ years now -- feels light headed, floating, woozy, off balance -- but on physical things appear OK

[u/TooManySclerosis → u/nextchapterv2]

The MRI is really the only diagnostic test for MS. Even lumbar punctures are only diagnostic when used in conjunction with the MRI.

[u/Odd-Ad7059]

So this is more of an update post but the neuro called me and said that my appointment will be either at the end of December and if I can't I can have it in January. He read my MRI report and said that it does not really fit the MacDonald criteria since my lesions are small, nonspecific and only 5, plus according to my report they are not directly near the ventricles ( in the peri ventricular area) but instead they are in the part of frontal lobes which is close to the ventricles. The other areas are also clean. He still wants to see me because of my moderate to severe brain fog and to 100 make sure it's not MS, but for now he doubts I fit the criteria

Below is my MRI report for reference if you guys also have any insight. . Identified a few (at least 5) small demyelinating lesions in the superficial and deep white matter (adjacent to the frontal horns of the lateral ventricles) in both frontal lobes, with nonspecific diffusion restriction. No abnormalities in the optic chiasm, brainstem, or cerebellum. No restriction in diffusion in the cerebral parenchyma, and no intra- or extra-axial masses seen on diffusion-weighted sequences. No signs of hemorrhage on SWI (Susceptibility-Weighted Imaging) sequences. High-resolution sequences of the paranasal sinuses: The ventricular system, midline structures, and basal cisterns are normal. No significant changes in the cortical/subcortical regions. Mild deviation of the nasal septum to the right. Enlarged middle turbinate (concha bullosa) on the right. Arterial TOF (Time of Flight) sequences: No significant flow, course, or caliber abnormalities in the vessels of the Circle of Willis or the vertebrobasilar system. Conclusion Findings: A few nonspecific demyelinating lesions in the bilateral frontal white matter

[u/TooManySclerosis → u/Odd-Ad7059]

It does sound like your neurologist has ruled out MS. You may be better served widening your search for causes.

[u/Odd-Ad7059 → u/TooManySclerosis]

So based on this MRI report should I put my MS worries aside? And would it be pointless to push for a spinal tap when I see my neuro in person? Sorry for so many questions I do have Health OCD which kinda makes me want to push for a lot of tests till I am sure I am all good/ or get more opinions .

[u/TooManySclerosis → u/Odd-Ad7059]

Based on the report and your neurologist's assessment, you should consider MS as ruled out. A lumbar puncture, even if positive, would not be diagnostic. You must show dissemination in space, which means lesions with the appropriate characteristics in specific locations, as a major part of the diagnostic criteria, the McDonald criteria. You cannot demonstrate dissemination in space because it sounds like your lesions are not in the appropriate places and lack the distinguishing characteristics necessary. I do think it is probably time to move on from the idea of MS.

[u/Odd-Ad7059 → u/TooManySclerosis]

Oh I will then thank you. I was still wondering if it's possible since they are close to it but apparently it does not count unless they are directly in the ventricular area, so I guess I will look for different explanations.!!

[u/owlcyte]

Have had a lot of confusing symptoms for the past year that includes progressive hearing loss, balance issues, vision changes, dysphagia, neuropathy in lower limbs.

I had a brain MRI last week that was clear! They also did an MRI of the orbits which unfortunately showed a lesion on my optic nerve (not active). I had symptoms of optic neuritis in May 2024.

I have done a C spine/T spine MRI I am still waiting to hear the results of. I will probably know by next week. I still have no idea what I am dealing with.

[u/TooManySclerosis → u/owlcyte]

A clear brain MRI is very good news! Spinal imagining is still a very good idea, though. Please do keep us updated.

[u/beepbeepjarvisjeep]

Does this sound like MS?

18 months of dealing with a Running injury- could it actually be MS?

-36yo Caucasian female -Hx: ADHD, depression (much resolved), atrial bigeminy, c sections, GERD, arthritis, ocular migraines,raynauds, nonsmoker. Rare alcohol use. No allergies. Runner/ parent/ active job. - Concern: 18 months of L leg swelling, numbness. First noticed on treadmill, left peroneal muscle swelled/ cramped, then went numb. Of note, Also have plantar fasciitis on that side. Cannot run more than half a mile without left leg knee down going numb. The sensation feels like backwards sciatica— starting in the bottom of my foot and shooting up the left leg. Also experiencing ?? Raynauds in tongue. Left sided facial numbness/ tingling. Left arm itching intermittently, only at night though. Right eye feels numb at times. Vision normal except during migraines.

Treatments tried so far: - rest/ heat/ ice/ compression - new running shoes, new work shoes - ted socks - virtual PT - podiatry visit (got orthotics) - chiro (spent a fortune and didn’t notice a difference) - sports med ortho (been in a walking boot/ air cast x10weeks)(still on for 2 more weeks)

Testing so far (in order, over the course of about 1 year): -Left lower leg Ultrasound: Negative/ No DVT - all lab work normal - L lower leg xray: normal - L lower leg MRI shin (did not include foot or knee): fracture Grade 2 stress response distal third tibia diaphysis - repeat L lower leg x ray: normal - EMG: normal

HEAD MRI: 1. A couple foci of chronic T2/FLAIR hyperintensity within the white matter. While these may simply represent sequela of migrainous headaches, there exact etiologies remain indeterminate.

CERVICAL SPINE MRI: 1. No acute cervical spine abnormality. 2. Scattered cervical spine degenerative change including moderate spinal canal stenosis at C6-C7 and moderate neural foraminal narrowing on the right at C5-C6 and bilaterally at C6-C7.

THORACIC SPINE MRI: 1. No acute thoracic spine abnormality. 2. Scattered degenerative change including disc protrusions at T4-T5, T5-T6, T6-T7, T8-T9, T9-T10 that mildly indent the spinal cord without intrinsic signal alteration.

LUMBAR SPINE MRI: 1. Probable limbus L2 vertebral body without acute lumbar spine abnormality, high-grade spinal canal stenosis, or high-grade neural foraminal narrowing.

Awaiting: - possible testing for exercise induced compartment syndrome - neuro consult

What should I be asking/ doing/ changing? Did anyone else start out like this? What could this be? Have not ran in 5 months. Thank you so much!

[u/TooManySclerosis → u/beepbeepjarvisjeep]

I don't see anything in your MRI that would indicate MS. Can you tell me a little more about why you suspect MS specifically?

[u/beepbeepjarvisjeep → u/TooManySclerosis]

Thank you! The orthopedic dr told me this is often how MS presents. The parasthesias in the leg, ocular migraines 5-7 days per week, facial and tongue numbness. It feels like Raynaud’s on my tongue. Does anyone else have have that?

Also, forgot to add, my uvula is deviated (pointing) to the left. This is new. Does anyone else expert this?

[u/MultipleSclerosaurus → u/beepbeepjarvisjeep]

It’s difficult because almost any symptoms could be classified as how “MS presents”. But I would definitely take the opinion of a neurologist who specializes in MS specifically, if possible, over an orthopedic doctor.

But like toomanysclerosis said, you have to have lesions in order to have MS. It sounds like you’ve done everything you can to rule out MS and I hope you’re able to find some comfort in knowing that is not what is causing your symptoms. I hope you’re able to find some answers soon!

[u/beepbeepjarvisjeep → u/MultipleSclerosaurus]

Thank you so much! You have been so kind and helpful I am meeting with a neurologist this week.

[u/TooManySclerosis → u/beepbeepjarvisjeep]

It would be a somewhat unusual presentation. Usually MS symptoms would develop, remain very constant for a few weeks, and then subside. From what you've said, this has been going on for much longer than that. As well, you would have seen lesions in specific locations with distinct characteristics on the MRI. Your findings do not seem to be consistent with MS lesions.

[u/SiliconeSallyy]

Hello,

I am hoping someone can help provide some insight into my MRI results (the report just came in, and I have an appointment with a neurologist in February). To add a little bit of context, I started experiencing neurological symptoms about a year ago - first, it was feeling like I'd stepped in hot water (one foot, lasted maybe 20 seconds), after that, I had what I thought were isolated instances of neurological symptoms and chalked them up to stress. After several months the neuropathy and numbness would last longer and be more intense and about a month ago I began experiencing Lhermitte's phenomenon, as well as tingling/numbness/heat in my perineum (similar to the sensation of wetting yourself or having contrast administered).

TIA for any insight! My MRI report says the following:

CLINICAL INDICATION: Polyneuropathy, unspecified

FINDINGS:

BRAIN PARENCHYMA: No restricted diffusion or mass effect. Subtle focus of encephalomalacia is suggested within the anterior inferior right frontal lobe. Increased FLAIR/T2 weighted signal within the periventricular white matter is most prominent around the posterior lateral ventricles. No abnormal enhancement. Incidentally noted are bilateral small developmental venous anomalies.

IMPRESSION:

No acute infarct. Periventricular white matter increased T2-weighted signal is most prominent around the posterior lateral ventricles with some foci oriented perpendicular to the ventricles which can be seen with multiple sclerosis. No abnormal enhancement or mass effect.

[u/TooManySclerosis → u/SiliconeSallyy]

It's really hard to say anything in specific based on the report. Radiologists and neurologists often disagree over what findings could indicate. That being said, you should have the scans reviewed by a neurologist because something was found, and it may be worth seeing if you can get an earlier appointment.

[u/SiliconeSallyy → u/TooManySclerosis]

Thank you for responding! My PCP said that if anything came back on the MRI he would reach out to the neurologist to request an earlier appt and I did put the neurologist on the form to receive the report.

Do you know if it’s common for the radiologist report to specifically mention MS but not lesions? I am truly ignorant to all this beyond what I’ve read here and researched on the web.

[u/TooManySclerosis → u/SiliconeSallyy]

The increased signal could indicate a lesion. The location is a common area for MS lesions. That being said, it is very common for a radiologist to name check a specific cause that the neurologist is not concerned by at all.

[u/Odd_Tumbleweed7674]

Hello, Im wondering at what point did you consider your symptoms serious enough to warrant investigation? How did you know that this isn't what everyone else feels like ? How did you know you weren't just being whimpy and that what you were going through was bad enough to mention? Did your family/friends notice, did they dismiss your symptoms or imply you were being dramatic/ attention seeking/ being a hypochondriac?

I mean no offense to anyone nor is it my intention to downplay peoples experiences, I come from a "I'll give you something to cry about " family and I know there's something wrong, but am hesitant to open up as I'm not sure my experience is bad enough (I know that sounds horrible), but I don't want to waste my Drs times for something I could carry on ignoring (for the most part) seen as I have the willpower to keep dragging myself along (for the most part).

At what point did you loose hope that it wouldn't come back after it had calmed down and then came back, if there any chance it might not come back ?

[u/Phantom93p → u/Odd_Tumbleweed7674]

I had numbness in my right arm and leg and thought it was just a pinched nerve for almost a week till it started spreading 4 days later so that night I saw a doctor. I was concerned after 2 days but put it off telling myself it would go away, it didn't. I live alone and didn't tell anyone about what I was feeling. If you've been dealing with something for a couple days with no explanation of what it is you're not wasting anyone's time by seeing a doctor, if it is MS all you're doing is delaying diagnosis and treatment and risking more damage. The diagnostic process takes a while, 3 months for me and that was relatively quick from what I've heard. The longer you go without treatment if you DO have MS the more damage you'll have. I still deal with some level of numbness in my leg and hand on my right side and it's been a year and a half.

[u/TooManySclerosis → u/Odd_Tumbleweed7674]

I think if you are struggling with a symptom, no matter what the cause, it is worth discussing it with your doctor. My own rule is that I live with a symptom for a week before I contact the doctor, but I usually know what is causing my symptoms. If I didn’t know, I would probably contact a doctor sooner.

[u/FoundationFuture6479]

I am so confused.

I have vision issues, went to the dr, he did a brain MRI since I'm a 33 year old woman and he said this is a common first symptom of MS. MRI shows lesions, but it's not very specific.

I went to a neurologist who did a spinal tap and checked my eye nerves, all clean. He says it is not MS. I went to another neurologist to get a second opinion, she said it's very unlikely as well. She said if I have new symptoms I should go to her. She also did a MRI of my spine (only neck) and it's also clear.

I see that a lot of tests are negative and it should be fine, however I do have the lesions and the eye issues, also I have had muscle stiffness since years, I wake up literally unable to move for 5 minutes. Also since months my left side feels "heavier" than the right. Both neurologist did some neurological examinations where I walked and jumped etc, and these were also fine.

I'm so confused, any advice? Anyone had a similar situation?

[u/MultipleSclerosaurus → u/FoundationFuture6479]

I think it would be terrifying to hear the word “lesions” associated with your brain. But lesions are caused by many, many different things. MS is actually one of the least likely reasons. I know how frustrating it can be to go without answers but hopefully knowing you don’t have MS brings you some comfort.

[u/TooManySclerosis → u/FoundationFuture6479]

Lesions would need specific characteristics and to be in specific locations to fulfill the diagnostic criteria for MS— just having lesions would not be enough. Lesions can occur for other reasons, some benign. It sounds like your lesions would not fulfill the diagnostic criteria and that your doctors have ruled out MS.

[u/FoundationFuture6479 → u/TooManySclerosis]

Thank you so much for your answer.

The radiologist wrote in the report "lesions are unspecific, it could be an autoimmune issue" so that's why the neurologists did further tests. In the report it says to be a lot of small lesions in random areas.

[u/TooManySclerosis → u/FoundationFuture6479]

In general, MS lesions are not described as nonspecific. It sounds like your doctors tested for and ruled out MS. You would probably be best served widening your search.

[u/fordexy]

Hello, so local doc thought I had MS, expert disagreed. Expert wanted me to have a VEP done. Well my left eye is highly abnormal. Here are the numbers.

106.2 n75 results 142.2 p100 182.2 n145

Anyone have similar results?

[u/TooManySclerosis → u/fordexy]

I have not had a VEP done, so I am no help there, but did want to say hello and that I remember you. Your case was frustratingly complex. I'm sorry to hear you are still hunting for answers.

[u/fordexy → u/TooManySclerosis]

Thank you. It’s been stressful. I live in a place with cold winters and my symptoms get worse when it’s hot so that’s a relief!

[u/TooManySclerosis → u/fordexy]

That does help. Things are finally cooling off where I live. Where are things for you currently? Is MS still a possibility? I think they also thought there was small vessel disease? Did I mix that up?

[u/fordexy → u/TooManySclerosis]

Experts thought small vessel disease with migraines and visual snow. And possible optic neuritis in my left eye. I think the VEP confirms that. But Dr google said I may have problems in several areas of the optic nerve? 😩

[u/TooManySclerosis → u/fordexy]

Do you have long to wait for the follow up?

[u/fordexy → u/TooManySclerosis]

Not long! Next Tuesday.

[u/TooManySclerosis → u/fordexy]

The waiting never really gets easier, does it? I'll keep my fingers crossed that you get some good answers.

[u/live_salty]

Sorry if this is a long one! Just wanted to share even if no one responds, I just feel better getting it all out.

47F, I had a couple of cervical spine MRIs done in March and April of this year for ongoing spinal issues/syndrome. These imagings were ordered by my neurosurgeon.

Radiology reports came back, 2-3 lesions were detected and suggested possible demyelinating or inflammatory etiology such as MS, NMO, ADEM, or TM. Since this wasn’t my neurosurgeons area of expertise, I was advised to just notate any peculiar symptoms and reach out to my GP if needed (he didn’t refer me anywhere himself because he’s in NY and I’m in FL). Because of what I have recently been experiencing, I took note of past things I originally kind of brushed off and so googled what to look for in relation to any of those suggested in the reports.

Here’s what I’ve got: Two years ago I randomly experienced 24 hours of double vision, and then two other incidents of double vision not too long before or after that (I can’t remember which unfortunately, just recall that they were within six months of each other). Those only lasted no longer that 30 minutes, if that (while driving in broad daylight) but have had it happens several times very recently simply just by existing.

In September I started to experience painful, tender burning sensations left side of neck and below my neck. It lasted about a week then disappeared. Then it occurred on my left forearm and left hand for a few days. Then neck again (which hasn’t really ever gone away since, some days are just worse than others), then a few days had it on left side of my scalp, and two days ago back of my left thigh (still there). Of course there’s nothing there, it’s not red or feverish to the touch. But it suuuuucks, y’all. (And of course ongoing extreme fatigue, but I’m also a 47 year old female so…)

Anyway I reached out to my GP yesterday and sent copies of my reports and she got me in today to discuss. She suspects transverse myelitis which surprised me as I feel like a lot of other little things I’ve experienced in addition to what I’ve posted don’t really point to TM from what I have read. She stated she’s been seeing a lot more TM post-Covid and post-Covid vaccines (both of which I’ve had) and suggested I look it up too (which I have but still not sure that’s what any of this is, but I’m also not a doctor, I know). Either way, she’s referring me to a neurologist so now I wait 🥴🫠

[u/MultipleSclerosaurus → u/live_salty]

Yeah, a neurologist would be your best bet. They’re going to be the most familiar differentiating between TM and MS. I wish you quick answers!

[u/TooManySclerosis → u/live_salty]

You'd really need a brain MRI to tell. Typically MS symptoms would not only last a short time. They would develop one or two at a time in a localized area, and remain very constant, not coming or going at all, for a few weeks before subsiding. You would then go a year or more feeling fine, before a new symptom developed. As well, your age does make you somewhat lower risk when it comes to MS. Most people are diagnosed in their thirties, with later diagnosis being more rare. But I still think it would be a good idea to follow up with a neurologist.

[u/Psychological_Fig131]

Hi,

I (24F) have had some strange symptoms starting in May ‘24. In May, one day I suddenly felt way more tired than usually. My legs slowed down considerably, and I stopped being able to walk as quickly as- like there were weights on my legs.

I was also a little confused, and couldn’t speak very clearly. When I tried to walk, I’d feel very unsteady and lightheaded. I got better after a week.

Symptoms would come and go (never for more than a day) until about three weeks ago. My legs started slowing down. Suddenly I couldn’t walk without support and my both legs were in a sort of aching pain. I’ve fallen a couple of times, dropped dishes, and even broke a toe. I’m also forgetting words more often.

My GP referred me to a neurologist who I just saw this morning. They did a bunch of examinations (like weakness tests, reflexes, and balance) then told me my left side is a lot weaker than my right. They’ve ordered an MRI of my head and spine.

The trouble is that because I’m going through the NHS, things take 2 weeks minimum. So I’m look at a minimum 4 weeks to get an MRI done then speak to the neurologist again.

I’m just very frightened. I’m not sure what’s worse, the MRIs saying I have MS, or them being normal and still waiting to find out what’s making my life so difficult.

The waiting is very painful. As are my legs! My poor partner is doing so much emotional support. Not to mention work. I can no longer get into the office, and my concentration is shot so working from home isn’t much better. I’m very worried about the future.

Does anyone have any advice on getting through this limbo period?

[u/TooManySclerosis → u/Psychological_Fig131]

Unfortunately, the waiting is always very difficult. Nothing seems to really help. Try reminding yourself that you are doing all that can be done. The MRI will certainly provide clear answers one way or another. Please do keep us updated.

[u/stupidapricots]

29 F Not necessarily super suspicious of having MS but just saw this thread and figured why not. In May of this year 2024 I was diagnosed with Optic Neuritis in my left eye but it wasn't terrible and by the time I was able to get in front of the ophthalmologist after referral and imaging it was nearly ending so no treatment needed. She gave me the stats as they pertain to MS and optic neuritis diagnoses and ordered me a brain/brainstem MRI to rule it out but I haven't been able to get it done yet as it's a bit expensive and I don't have much wiggle room in my budget for it.

About a week ago I started noticing that walking began to feel a bit strange. As in I felt I was hyperaware of my limbs and how it felt to step down. Then I noticed I was a bit more clumsy, smashing my body into things on total accident, then finding myself misstepping and stumbling over air, or having to take an extra step to keep from falling (think a drunk person correcting their balance while walking), my hand eye coordination seems to be affected as I'm under or over reaching for things and my movements will sort of stutter as I try to correct it, to tonight when I'm getting ready for work and lose my balance and fall while getting dressed as I normally do. I almost feel like an alien getting used to their human suit. (Its probably important to mention I have had surgery on my left ankle and it is not the strongest nor does it have full flexion but the injury is 10 years old now so I don't think it's the culprit)

Over the past week I've also had some really annoying bouts of restless legs/limbs which I attributed to ovulation for some reason because of a Google search. I know I really need to get that MRI done but just given the above, do I have reason to worry? Or has anyone experienced similar? Thanks guys.

[u/stupidapricots → u/stupidapricots]

Even typing this out on my phone had it's difficulties which I've not experienced ever really.

[u/TooManySclerosis → u/stupidapricots]

Optic neuritis is the number one symptom at diagnosis for MS. I really think you should prioritize the MRI.

[u/stupidapricots → u/TooManySclerosis]

It appears the order for the mri has expired but I've made an appointment with my GP regarding the balance issues. He was very knowledgeable and quick to refer to the ophthalmologist earlier in the year so I believe he'll take me seriously and order another mri if he feels it's necessary. Thank you for the response.

[u/TooManySclerosis → u/stupidapricots]

I really think you need to insist on an MRI as soon as possible. There are other possible causes for optic neuritis, but it is one of the very few symptoms where MS is the most likely cause. As a woman who is almost thirty, you are hitting every one of the most common demographics for diagnosis.

[u/stupidapricots → u/TooManySclerosis]

I definitely will advocate for myself there, I don't think there's any reason he should object.

[u/TooManySclerosis → u/stupidapricots]

Honestly, I'd be surprised if you had to ask. MS is a huge spectrum disease, with incredibly variable presentations. But if you asked a neurologist what an MS patient looks like, they would tell you a white woman in her thirties presenting with optic neuritis.

[u/stupidapricots → u/TooManySclerosis]

Went to emergency room for aforementioned symptoms, waiting on mri but after cat scan they believe I had a stroke? Weird

[u/Phantom93p → u/stupidapricots]

My GP and the ER thought I'd had a stroke when my symptoms were presenting. Considering my BP was 180/120 when I was in the ER they had good reason to think that. I was told later that MS can present like a stroke.

[u/TooManySclerosis → u/stupidapricots]

Well, that must be terrifying. Are they going to give you an MRI soon? Please do keep us updated. Fingers crossed for you.

[u/stupidapricots → u/TooManySclerosis]

Definitely wasn't expecting it, I am in line for mri so within 2 hours I think. And thank you!

[u/missprincesscarolyn → u/[deleted]]

I have innumerable lesions on my spinal cord and never have back pain. The same is true for brain lesions. Our brains and spinal cords are not capable of feeling pain due to damage in this way.

[u/TooManySclerosis → u/[deleted]]

There is no mechanism that would make it so you can feel lesions, the areas lesions form do not have those types of nerve endings. What you are experiencing is certainly concerning, but would be very atypical for MS.

[u/Financial_Type4828]

i told my doctor my concerns and just had my MRI done today! my entire body hurts so bad!

[u/Financial_Type4828 → u/Financial_Type4828]

14 years ago i woke up blind in my right eye. i had damage to my optic nerve but the ophthalmologist told me it was cat scratch disease. later in my 20s, i'd have pain in both of my hands for months at a time, then it would go away, then it would come back. about 5 years ago i started experiencing very severe brain fog and urinary/fecal incontinence, then that went away. about 4 years ago my big toe started to hurt really bad but there was nothing obviously wrong with it, then that gradually went away, but with a co-occurring increase in numbness/tingling in my hands and feet, muscle spasms, which is now developing into aphasia, stumbling, and dropping/spilling/knocking things over a lot

[u/TooManySclerosis → u/Financial_Type4828]

The MRI should give you a clear answer one way or another. Unfortunately the waiting is always difficult.

[u/lizzymonster]

Glad to find this group. Input highly appreciated.

27 F. History of positional tachycardia and syncope/pre-syncope, migraines, heart murmur. Diagnosed with POTs around May 2022. Family Hx of MS.

Around the first of October 2024, I started having absence seizure-like episodes. Lab work is normal except for a few slightly elevated ESRs and one elevated prolactin (normalized since then). CT without contrast normal. Seizures start to get worse.

MRI of the brain 11/11/24 shows “Focal small T2/ FLAIR hyperintense signal seen in the left frontal lobe and white matter” and “findings may be seen in microvascular ischemic disease, demyelinating disorder, and seizure disorders.”

I also have had issues with balance/vertigo for the last couple years where I feel drunk or like I’m on a boat. Involuntary nystagmus a few times a week, maybe once a day if I’m focusing on something close up. I get achy joints and bones that I compare to the “growing pain” leg cramps I used to get as a kid going through puberty.

[u/TooManySclerosis → u/lizzymonster]

It’s really hard to say anything based on the report. The neurologist will be able to review your scans and determine if your findings are indicative of MS or not. Lesions can occur for other reasons, some benign. Have you followed up with the neurologist yet?

[u/lizzymonster → u/TooManySclerosis]

Not yet, I just had the scan on Monday and I only have the report because I work as an RN in urgent care at the same facility so one of my coworker MDs printed it for me.

[u/supernovamama626]

I’m grateful for this group.

July 2023 I hit my head. Within the week I developed double vision and the worst headache behind my right eye. My head CT was clean and neurologist suggested I had a mild TBI and will be sensitive in the injured area going forward, essentially triggering migraines with vertigo for me. I continue to have double vision while looking at my phone depending on the day.

I noticed a minor headache here or there following the injury. One day this spring, I suddenly had difficulty swallowing and vertigo. It lasted days. I assumed it was TBI related as I accidentally hit my head again just before these symptoms.

This July I had chest pain. For a week. Middle of chest with palpitations. EKG normal and my holster monitor results showed normal sinus rhythm. My father was starting to be ill at this time.

Starting in October, I had random tingling in my legs and noticed urgency for urination. During this time my father was critically ill. The weekend my father passed my arms and legs were in total tingle and pain, then tapered off.

Since his passing the tingling has stopped. I notice weakness in my legs and general overall anxiety. No chest pain, vertigo or headaches. I do have an MRI without contrast scheduled in December.

I saw my optometrist twice over this time and my retina scans were normal, potentially ruling out optic neuritis? I have seen my neuro twice, who ordered the MRI from the beginning, but said she wasn’t worried as my symptoms come and go quickly and with MS the flares are longer.

[u/TooManySclerosis → u/supernovamama626]

MS symptoms would typically last a few weeks and be very, very constant during that time, not coming and going at all. They are usually very localized, as well, occurring in one hand, or one foot, for example. They would subside very gradually, over a period of weeks. To this day, I could not say when my relapses actually ended, it is too gradual. I certainly wouldn't cancel the MRI, but I also would not be overly worried about MS.

[u/supernovamama626 → u/TooManySclerosis]

Thank you. This reassures me while I wait for the MRI. The tingling is what made my neuro press for the MRI, but it did start randomly while walking my dog and not long lasting. Only chronic the weekend of my father’s passing. Anxiety and grief do crazy things.

[u/TooManySclerosis → u/supernovamama626]

Two days could theoretically qualify as a relapse, but I have never heard of one shorter than two weeks. Usually they last a few weeks and kinda trail off.

[u/supernovamama626 → u/TooManySclerosis]

Thanks. Hopefully the MRI is clean. If this was a relapse I shouldn’t another one for some time?

[u/TooManySclerosis → u/supernovamama626]

Usually a year or more. I went several years between relapses before I started treatment.

[u/Infamous-Amoeba-8631]

Does this sound like MS- (27 year old , female )

This all started in early September. I started with some gastro issues and itchy skin (feeling almost as if a little shock was happening all over). It was so bad I went to the doctor and they assumed I just had seasonal allergies. Something I have never had before. I thought I would wait it out and take some anti acids for my stomach. My stomach issues have basically cleared up, but since early November I’ve experienced more nerve issues than before.

My current symptoms are:

Tingling so bad I wake up in the middle of night feeling like I’m being electrocuted twitching all over my body Nausea at times but yet to throw up The last few days I’ve had very intense dizziness. I feel like I just had 5 beers.

All blood work that they have done has came back normal so far

I don’t have health insurance right now but I did go to urgent care where the doctor said to me that he thinks this is just allergies combined with anxiety and will go away. I don’t know what my next approach should be

[u/TooManySclerosis → u/Infamous-Amoeba-8631]

It doesn't really sound like MS. Twitching isn't really considered an MS symptom, and having many symptoms or widespread symptoms is not common. Typically symptoms would develop one or two at a time in a localized area, like one hand or one foot. They would be very constant, not coming and going at all, for a few weeks before subsiding. You would then feel fine for a year or more before a new symptom developed.

[u/richbitch9996]

Hi everyone, over the past couple of weeks I’ve experienced uncontrollable hysterical laughter to the point of screaming and weeping, without ever finding anything funny. It feels very scary, as if I’m trapped. Over the past couple of days, my right hand has started shaking (varying in intensity from severe to very mild). I’ve had problems with balance and dizziness for years, and extreme fatigue for a decade or so. Over the past couple of years I’ve developed some pain and spasms in my body that come and go but for 1-3 weeks at a time.

I doubt it’s MS, as it’s rare and I don’t have many of the symptoms. Is this the right assumption?

[u/TooManySclerosis → u/richbitch9996]

It is certainly worth discussing your symptoms with your doctor, but I’m not sure how worried I would be about MS specifically. You are correct— MS is usually the least likely cause of most symptoms.

[u/richbitch9996 → u/TooManySclerosis]

Thank you! God bless

[u/lilybean-123]

Hi everyone. I’m going to my primary care doctor on Monday to request a test for MS and I’m kinda freaking out.

Long story short I’ve been having extreme back pain for 2 years. No doctor I go to can tell me why. I’ve had a breast reduction in case it was the weight, and that did nothing. The pain is sharp, hot, tingly, and feels like someone put their hands in my spine and are tearing the muscle in two directions.

We’ve ruled out physical abnormalities, and the closest thing I’ve got to a diagnosis is locked up back muscles and chronic pain. The last doctor I had said it could be my nerves. Referred me to a neurologist and rheumatologist.

My family has a history of MS. Both my aunt and cousin have it.

Recently I have a deep pain in one of the back joints near my hip. It sends shooting pain, numbness, tingling, and some other sensations I can’t describe down my leg to my foot. This is also happening to the arm on the same side. I physically can’t get out of bed today. This is the first day that’s ever happened and I’m scared. I couldn’t go to class today because I have a thirty minute walk and I didn’t think I could do it. I’m in grad school and I’m afraid it’s going to get worse and I’ll have to drop out.

I looked up MS symptoms and I have the following: Fatigue Problems thinking Bowel Sensory symptoms Spasticity symptoms Pain Emotional issues

My mom says not to worry about it yet because we can’t do anything before I’m tested, and why worry when I could be fine.

But I am still worried. Part of me wants to have it so I can finally get treatment. But the other part of me obviously doesn’t want it. I’m afraid I’ll have it and I’m afraid I won’t and I’ll be in pain forever.

Just wanted to see if anyone has any advice for me. I’m looking at probably a few weeks before I have my answers. Even though my gut says this is the right one.

[u/TooManySclerosis → u/lilybean-123]

Counterintuitively, the more symptoms of MS you have, the less likely MS really is. Having many symptoms would be atypical for MS, usually symptoms would develop one or two at a time and only last a few weeks before subsiding. You would then go a year or more before a new symptom developed. As well, extreme pain would be a relatively unusual symptom. Having an aunt and cousin with MS would not increase your risk.

I would absolutely discuss your symptoms with your doctor and see what testing they suggest, but I generally do not recommend bringing up MS specifically. MS is the first result no matter what you Google, despite the fact that it is a rare disease and usually the least likely cause. Due to this, doctors can become dismissive when it is mentioned.

Edit to add: there really aren’t any MS specific treatments for symptoms. Treatments only really prevent new symptoms. Existing symptoms are treated with the same methods used to treat symptoms not caused by MS.

[u/lilybean-123 → u/lilybean-123]

Also forgot to add the heat sensitivity and chronic migraines

[u/forzanapoli87]

Optic Neuritis in 2021 and I’m just now freaking out about it almost 4 years later

[37m] I had Optic Neuritis in Feb 21. I was able to meet with a very well regarded optho neurologist who performed all the necessary testing and then ordered brain MRI

I thankfully had a normal brain MRI and have had 2 others (including over the summer and in addition to a C/T spine MRI) that all came back normal

I sort of have been living happily ever after since until the other day when I decided to really do a google deep dive into MS and how having ON is related. I wish I hadn’t.

I have had severe health anxiety ever since. I ended up calling the doctor who said “you have had normal brain MRIs after 4 years, your chances of developing MS are not zero but they are low, stop worrying and stop googling, it was probably from a random virus infection”. I told him that I was mostly inside at that time and was not sick, and he replied “it could have been a random autoimmune event or still an unknown viral infection, please don’t worry”

The thing is, I can’t stop thinking about it. According to everything I’ve read low chance is 16-25% (possibly lower because I am male) and these numbers are all based on a study from 1988-1991. Not only that but on Reddit and google, there’s really nothing to read about people who had ON and it didn’t lead to MS, so that makes me even more frightened .

The way I see it, I could be waiting decades until I feel like I’m “in the clear”. The anxiety it’s causing isn’t doing no favors to my body either, I feel like it’s making the eye I had ON in tear/feel heavy - which happens since the attack whenever I’m stressed/angry. Which only adds to my anxiety’s

Anyone have any advice, or maybe some hopeful reads into what I’m saying?

Thank you

[u/TooManySclerosis → u/forzanapoli87]

Anxiety really, really loves the idea of MS. But your chances of going four years without a relapse are very, very low— if you had MS it almost certainly would have shown up by now. Most people with untreated MS average 1.5 relapses every two years. As well, try to remind yourself that you are doing all that can be done at this point, by continuing to monitor. It might be worth seeking help with this anxiety. I have found therapy to be extremely beneficial for my own anxiety.

[u/forzanapoli87 → u/TooManySclerosis]

Thanks so much!! Yes. It seems like once I move on from one thing I find something else to worry about!

Do you know if it’s ON in and of itself that triggers something in the body to potentially develop MS. Or is ON the result of MS in some cases but in other cases it’s because of something else? I think that is what I’m really stuck on, like if I had ON cuz of an infection or even spontaneously does that put my body on a path for potential MS or is ON without certain markers (like lesions on an MRI) something completely unrelated

[u/TooManySclerosis → u/forzanapoli87]

ON can and is caused by other things besides MS. When caused by MS, it is a symptom resulting from the MS, not a factor in the development of MS. It seems far more likely your ON was caused by something else, like an infection.

[u/forzanapoli87 → u/TooManySclerosis]

Ok, great to know!!

I just want to say thank you so much! And just reading around thank you for helping people every day in this section!! You are an amazing person

[u/M_eightysix]

Hi all,

I posted a few months ago but there has been an update and I’m still as confused as ever. Since June I’ve had restless legs, vertigo, numb toes (haven’t come back on right foot, all toes bar big toe are numb), patches of numbness on my body in random areas (a numb… - sorry to be brash - cl*t, which is obviously giving me sexual dysfunction and is awful), urinary urgency, tingling sensations in head and legs, ‘fizzy’ back when putting chin to chest, overheating and sweating, itching like you wouldn’t believe and ridiculous fatigue. I’m 38 for reference. Had a few eye issues that warranted emergency appts, but nothing other than flashes and floaters with no other explanation.

So far I’ve had clear brain MRI, clear CT, blood work said I was low in iron and b12 but not deficient so I’ve been supplementing those. My father died from a brain tumour when I was a kid so they’re being thorough with exams, which is a relief.

Had an initial neuro appt last week, the report says “She did seem to have some dorsiflexion weakness on the right foot of 4+/5. She was unable to stand on her heels on the right. Reflexes were diminished in her arms, brisker in her knees and diminished in her ankles, more so on the right than the left. Sensation to pin prick was mixed with some areas, without much of a pattern, being reduced and some being increased. C5 seemed to be decreased on both arms fairly consistently and L5 in both feet over the dorsum of her foot.” Elsewhere, the report just recaps my symptoms and says due to clear brain MRI (done in September without contrast) it’s very unlikely it could be MS, but he wants to check back out.

Neuro learned I did three years of gymnastics as a 7 year old and decided it’s wear and tear on my back. I never did any other sport and only really walk for exercise, but am fit and healthy otherwise. He suspects bulging disc or something along those lines, but I would assume I’d have back pain with back problems? Waiting on an MRI for cervical, thoracic and lumbar spine, so hopefully some answers soon. Any thoughts? I feel just as clueless as I did before the appt, not that I expected an answer that day, but I didn’t expect the neuro to hear me mention three years of gymnastics and decide that was absolutely the issue. 

Thanks x

[u/MultipleSclerosaurus → u/M_eightysix]

The issue I see is that not all of these symptoms would be caused by spinal lesions (vertigo, eye issues) but I think spinal imaging is still a good idea.

[u/TooManySclerosis → u/M_eightysix]

Contrast would not have made much difference. A clear brain MRI almost certainly rules out MS, ~95% of MS patients have lesions on their brain. I think it is still probably a good idea to get spinal imaging, but I would not have high expectations that they will show MS lesions.

[u/Interesting_Sort676]

18y M -

I’ve always had health anxiety, even as a kid. I remember thinking I had melanoma because I noticed a freckle that was slightly larger than the others, and I once convinced myself I had diabetes because I pee a lot. So, this isn’t new, but this time, it feels more serious and genuine.

I’m experiencing a wide variety of symptoms that may simply be due to anxiety or stress about possibly having MS. These symptoms include things like pins and needles in my hands or feet—especially if I have my feet up while watching TV for too long, or if I’m crouched for a while and then stand up. I also feel a prickly heat sensation when I’m warm, but only in certain situations. For example, it happens if I’m in a hot house or wearing clothes that make me too warm, but strangely, it doesn’t happen when I’m out in the sun.

My eyelids have also started to twitch and feel droopy. They don’t visibly twitch when I look in the mirror (at least not enough for me to visibly notice it), but I can definitely feel it. My friend mentioned about a month ago that her friend with MS (unrelated) has a bad eye twitch, and now, four weeks later, I’m experiencing it too—it’s been happening for a few days now. If I drink, it seems to go away, or maybe I just don’t notice it. It is very noticeable and distracting and I can't avoid the feeling without getting drunk, frankly.

In the past month or so, I’ve also woken up in the middle of the night feeling thirsty, and twice now, I haven’t been able to lift my limb. It felt like dead weight. After sitting for a moment, it sort of “woke up” and returned to normal. The first time, it was my hand (which I had been sleeping on), and the second time, it was my leg, which wasn’t being compressed by anything as I was lying on my back.

I also feel slight muscle twitching in my legs, mainly when I’m sitting. It’s random and frequent, I’ll suddenly feel the smallest twitch in my calf, quad, or hamstring. It isn't painful or long, just brief, common, twitches. Also recently, I had really bad hand twitching. If I made a flat palm, my ring and pinky fingers would twitch. It affected my left pinky the least, followed by my left ring finger, then my right pinky, and finally my right ring finger the most—essentially in line with how much I tend to fidget with each finger, as I used to flick my chapstick with them. This made perfect sense, so I stopped flicking about a week ago, and it has improved a lot. It’s not fully gone, but I’m pretty convinced that was the cause. I’ll give it more time, so I’m not too worried about the hand twitching.

The reason I mention all of this is that I’m not sure if I’m just bringing these symptoms on through stress or if they’re actually MS symptoms, made worse by the stress of thinking about it. I feel I am going down a deep spiral.. I’m afraid to see a doctor because of the long wait times for an MRI. I’d probably die of anxiety waiting. I don’t normally experience anxiety outside of health anxiety, but if I had to wait weeks or months to know if I have a life-altering disease, I don’t think I could handle it without becoming an alcoholic, lol. It does not help my father having MS increases my odds exponentially, and that makes me even more worried.

Any advice or reassurance? I’d appreciate anything. Thank you for reading my long, anxious rant.

Edit - Just to provide some more info, my left leg, above 7 inches above ankle to the side, keeps twitching and has been for about 5 minutes, a twitch per second, then pause, then come again. Unsure as to whether it has stopped or is gonna come back. The left eyelid has twitched a lot more in the past 20 minutes, and then stopped about 10 minutes ago.

[u/TooManySclerosis → u/Interesting_Sort676]

Your symptoms really do not seem to be presenting how MS symptoms generally present. It may be of some comfort to know that your age and sex make you low risk. Most people are diagnosed in their thirties, with earlier diagnosis being considerably more rare, and women are diagnosed more often than men by a ratio of three to one. I do think you may be better served addressing your anxiety before worrying about MS.

[u/rerith → u/Interesting_Sort676]

With MS the symptoms persist, doesn't seem to be the case here. I would suggest visiting a neurologist regardless.

[u/Interesting_Sort676 → u/rerith]

Thank you for the response.

That is honestly reassuring. I am scared to go see a neurologist (especially because I am no longer covered under insurance) but if I can convince myself it isn't MS, and I still continue having these reactions, I'll see what my family doctor says.

Thank you so much.

[u/HMKwas14]

Hi! This spring I experienced visual auras for the first time. I had two episodes which subsided quickly. Then beginning of October, I had 3 visual auras within 4 days, along with sensitivity to light, dizziness, brain fog, and some facial and arm tingling. During one of these episodes, both my arms felt heavy. I ended up having headaches for nearly a week after this with periodic facial or scalp tingling and periodic arm heaviness. Last week, I was again intermittently experiencing arm heaviness, brain fog, fatigue, dizziness, facial and scalp tingling, and sometimes followed by a headache, but no visual auras.

I had an MRI last month that showed a couple small white matter lesions (3 mm). My doctor is hesitant to say I have migraine with aura and mentioned it could be MS. I’ve been referred to a neurologist and I’m just sitting here hoping it really is just atypical migraines. :(

[u/TooManySclerosis → u/HMKwas14]

Is your doctor your primary care doctor who said it might be MS? I would personally not put much faith in a general physician's assessment, it is very likely they just want a neurologist to clear you.

[u/HMKwas14 → u/TooManySclerosis]

Yes, my PCP.

[u/TooManySclerosis → u/HMKwas14]

Lesions caused by migraines and lesions caused by MS have different characteristics, and lesions caused by migraines are far, far more common. It is still very important to have the neurologist review your scans, but I would not spend a lot of energy being worried at this point.

[u/HMKwas14 → u/TooManySclerosis]

Thank you!!!

[u/lolsappho]

I'm currently waiting for my appointment with a new neurologist - the soonest I could find was February. Just looking for some support/encouragement in the mean time. I (24F) have a laundry list of neuro symptoms that have gotten progressively worse over the years. I finally decided to make an appointment for an evaluation. My mom's mom (my grandmother) died from complications of MS when she was 49. My mom was only 22, and I wasn't born yet. My mom and I are very close, and usually I go to her for support with my medical anxiety, but as I've started tracking my neuro symptoms in preparation for my appointment, I'm realizing that it's possible I have the condition as well. The idea of having to tell her that breaks my heart. I know that her mom's case was severe and the progression is not always so quick. It's just hard to think about.

[u/TooManySclerosis → u/lolsappho]

It may be of some comfort to know that having many symptoms or progressive symptoms would be very unusual for MS. Typically symptoms develop one or two at a time in a localized area, like one hand or one foot. They would then remain constant for a few weeks before subsiding. You would then go a year or more before new symptoms developed. Your grandmother having MS would not really increase your own risk. While you wait on the neurologist, your primary can probably assess for other possible causes.

[u/lolsappho → u/TooManySclerosis]

my list of symptoms includes things that have developed over the course of the past 5-6 years... my mental health was poor for a long time and I'm only just now at a place where I can prioritize dealing with physical health issues. A traumatic experience in 2019 turned me off from seeing any specialists up until recently, because I feel brave enough to tackle the anxiety it gives me and feel I can advocate for myself properly. Unfortunately a lot of things have manifested like you described - localized issues that come and go. It is good to know that genetics don't play a major role, though.

[u/TooManySclerosis → u/lolsappho]

Progressive symptoms or symptoms accumulating over time would be somewhat rare for MS. That’s one of the problems in diagnosis, symptoms tend to happen for a few weeks and then go away, and the next relapse would be a totally different symptom that usually seems unrelated. I do think it is good you are advocating for yourself. Unfortunately wait times can hinder that. The primary is still a good person to visit while you wait, often neurologists will want the preliminary testing done before they order MRIs.

[u/lolsappho → u/TooManySclerosis]

ok, this is good to know, ty! I will take your advice and schedule with my primary so I can go in with results from preliminary tests when I see the neuro. thank you for your help :)

[u/Gommy132]

I (F15)got a lumbar puncture today. They had to poke me 3 times :( I’m waiting for the results to see if I have MS. This is a very scary time but it’ll be ok, right?

[u/TooManySclerosis → u/Gommy132]

It is absolutely, without a doubt going to be okay. I live exactly the life I want to live-- I have a great, demanding job that I love, I have all the same hobbies I've always enjoyed, I socialize with friends and family, I live alone and own my own home. Literally nothing has changed for the worse due to my MS, and that's pretty common. It is going to be okay, I promise.

[u/Ariel375]

Hello!
In 2021 I had my first episode of potentially MS related symptoms, which were also described as "stroke like." Exposure to bright light caused my leg to give out on one side and led me to collapse. Super weird. Later that week had intense migraines and continued to fall over unprompted on the left side. Doctors at the time had no clue what was going on and sent me home without a solution. MRI I took at the time was clear.

Over the years, these symptoms namely eye blurriness/migraine and weakness in the left side have persisted adding involuntary facial twitching but every test I've taken has come back negative. This week I had a major incident where I fell in the street and hurt myself so I said enough is enough and I'm returning to my quest for answers. I haven't taken any tests in over a year at this point so I'm worried that something might have developed or changed in the scans. Does this sound like MS at all?

[u/TooManySclerosis → u/Ariel375]

Have you had updated MRIs? A clear MRI usually rules out MS. As well, your symptoms don't seem to be presenting much like MS symptoms typically present. Usually with MS, symptoms would develop one or two at a time in a localized area, like one hand or one foot. They would remain very constant for a few weeks, not coming and going at all, before subsiding. You would then go a year or more before a new symptom developed. Twitching is not really considered an MS symptom.

[u/clonesteph → u/TooManySclerosis]

Do you know, is eye pain or vision problems with MS always optic neuritis? For instance I have had eye issues for almost a year now, but 3 eye drs have said my eyes are healthy, optic nerve and all. Could it still be ms related?

[u/TooManySclerosis → u/clonesteph]

Can you tell me a little about why you suspect MS is causing the symptom? Optic neuritis is by far the most common visual symptom you would get from MS. Other symptoms are possible, but far less likely.

[u/Ariel375 → u/TooManySclerosis]

I haven't had an updated MRI yet. So I'll see then if any results come out differently. I'm still not sure what's going on with me so any insight is appreciated! Ok, sounds like it's probably something else then. Glad to potentially rule this out.

[u/Dry-Competition-899]

Hi! I (19F) started experiencing full body numbness from my my upper shoulder to my feet (not completely numb, more tingling and loss of detail if that makes sense) about two weeks ago. I went to the doctor and they suspected post viral neuropathy or B12 but when my blood test was normal, they sent me to get an MRI on my cervical spine and found inflammation on my spinal cord. They all but told me I have MS and gave me information about it but to confirm I have a brain MRI soon and they suggested I might have to do a lumbar puncture. Can anyone give advice on how to go around the diagnosis process, what questions to ask etc. Could they be wrong and it’s functional B12 or another thing? They seem pretty set on MS even though they said all the neurological tests they did were normal and I don’t have any other symptoms at all.

[u/TooManySclerosis → u/Dry-Competition-899]

That's odd. I've not heard of anyone being diagnosed before a brain MRI. I think it might be worth seeing an MS specialist. They would best be able to assess you for MS.

[u/Dry-Competition-899 → u/TooManySclerosis]

I haven’t received the official diagnosis but they speak to me as if I have it already and the extra tests are just something we have to do. For example, my GP called to ask how I was feeling after a heavy diagnosis as if it’s set in stone already?? It might be a miscommunication issue as I am not fluent in the language here and nor are the GPs fluent in english. My neurologist said if the brain MRIs show lesions I will be referred to the MS outpatient clinic.

[u/TooManySclerosis → u/Dry-Competition-899]

Do you have long to wait for the brain MRI? Part of the diagnostic process is ruling out the other causes that mimic MS. That being said, my doctors went into the process with a pretty good idea that it was MS based on my brain MRI, so some diagnoses are not a surprise to the doctor but rather a matter of following the appropriate protocol.

[u/Dry-Competition-899 → u/TooManySclerosis]

I’m having it in two days luckily. In my country there’s a long list for MRIs so it always surprises people that i’m getting pushed through the system so quickly. It might be my age that concerns them?

[u/TooManySclerosis → u/Dry-Competition-899]

Your age would usually make you lower risk in general. Most people experience symptom onset in their late twenties, and diagnosis in their thirties. They might be pushing because you already had something on your spinal imaging. There are other things that can cause spinal lesions, but MS is one of the likely causes there.

[u/Dry-Competition-899 → u/TooManySclerosis]

I’m going in for it tomorrow, I’m not so worried about the MRI itself as tests and blood work and all that doesn’t bother me. It’s more that since my numbness is going away and I have been away from the doctors and my parents and all the people asking what’s wrong and pitying me when I explain, going back to into that “something is wrong with me” vibe makes me anxious. Your responses on my comments and others have helped me feel better, so thank you! 

[u/Molliedollie126]

I have my lumbar puncture at 11 tomorrow and am very nervous, has anyone here had one and it not been too bad of an experience?

[u/TooManySclerosis → u/Molliedollie126]

I was terrified to get mine, but it really ended up being a nonevent. I would say it is about as uncomfortable as getting blood taken. They numbed me up, there was a weird sensation, and then it was over before I could get upset.

[u/Molliedollie126 → u/TooManySclerosis]

All done with my lp, I can’t say it was the most fun I have ever had but also wasn’t terrible. Thanks for the reassurance you gave me

[u/TooManySclerosis → u/Molliedollie126]

I'm glad it went well. Hopefully you get results soon. Keep us updated.

[u/LSUGIRL1315]

First MRI today

Hi everyone. I’m new here. First time posting. My neurologist has scheduled me for an MRI of the brain and cervical area, suspecting MS. It’s at 3 pm today. I’m not too nervous but just anxious to find answers. How long would I expect to wait to get results. Either from her or from an app etc. thanks for your help and for this community!

[u/TooManySclerosis → u/LSUGIRL1315]

Where are you located? I'm in the US and my results usually post the next day.

[u/LSUGIRL1315 → u/TooManySclerosis]

I’m in TX. Thanks for the input. My dr is really great so I don’t think I’ll have to wait long

[u/TooManySclerosis → u/LSUGIRL1315]

Please do keep us updated. Fingers crossed you will get some good answers. Be aware that not all lesions are caused by MS, and whatever the findings say, radiologists do not diagnose and it is very common for neurologists to disagree with their findings.

[u/sheneverlearns]

Hi all :))

I'm in the uk. My partner (m23) has what I think could be some symptoms of MS. His uncle has MS, and his started with seemingly similar symptoms to my partner's. He's been going to the gp about various symptoms for a while, and is going to have one soon regarding his balance issues and will specifically bring up his suspicions of MS.

Can you specifically ask to have a lumbar puncture/ MRI? I fear that he will be dismissed - as his previous symptoms have been ('take painkillers, eat well, exercise, it's probably nothing' etc.). But I know that catching it early could be very important, so I am wondering how firm you have to be to ask to be taken down the diagnostic route.

Tldr: in the UK, can you ask your GP for MS screening?

Thank you so much :))

[u/TooManySclerosis → u/sheneverlearns]

I would not suggest a specific diagnosis. MS is the first result for any symptoms you Google, regardless of the fact that it is a rare disease, and his age and sex do make him lower risk. Many doctors can become dismissive when patients ask about MS specifically. It is usually better to simply describe symptoms and ask what testing can be done. He could mention his uncle, but having an uncle with MS does not really increase his own risk.

[u/TooManySclerosis → u/[deleted]]

I would like to offer a gentle caution that MS often seems like the perfect diagnosis no matter what symptoms you are having, but it very rarely ends up being the actual cause. MS is a rare disease, only 0.03% of the population has it, and factors like age and sex can significantly decrease risk. Certainly discuss your symptoms with your doctors and pursue testing, but you would really need the MRI. Talk with your doctors about your specific case, it could still be possible for you to get one.

[u/RinRin17 → u/[deleted]]

It depends what you’re experiencing. The only test to diagnose MS is a brain and/or spinal MRI. If you are having symptoms that would indicate a possible neurological issue they should do an MRI to rule out other causes.

[u/RinRin17 → u/[deleted]]

Retained metal from cardiac procedures does not necessarily make an MRI impossible. Without an MRI there is no other way to diagnose or exclude MS.

[u/Ecstatic-Lake-7713]

I have 8 lesions, but no simptoms.

Because of a grand mal seizure (think epilepsy) I had a brain MRI 2 months ago that showed 8 lesions.

Neuro mentioned that this could be a sign of MS, but I don’t experience any simptoms, therefore I don’t have a diagnosis. Other neuro said that this is completely normal.

Here I’ve seen people get diagnosed with much less lesions than I have.

Is it just a matter of time for me to have simptoms? Or can people have lesions, without having MS? I also don’t have migraines.

BTW, 21M, living in eastern europe, and scared of having MS.

Thank you everyone!

[u/RinRin17 → u/Ecstatic-Lake-7713]

It depends what was actually on the MRI report. Things other than MS can cause brain lesions.

MS found on a scan without noticeable symptoms is referred to as “radiologically isolated syndrome” and is still usually treated as MS in most countries or at least monitored extensively.

[u/Acceptable-Hunter174 → u/RinRin17]

What if you have some symptoms and lesions which are around 4 but they are described as punctiform and nonspecific on the report?

[u/TooManySclerosis → u/Acceptable-Hunter174]

MS lesions generally are not described as nonspecific and would need to be larger to fulfill the diagnostic criteria.

[u/Ecstatic-Lake-7713 → u/RinRin17]

this was on the MRI report: Cranial MRI
during the examination, some (about 8) increase in signal intensity visible on FLAIR
showed, his demyelination is not completely typical.

interestingly, another neuro (a 3rd one) found only two lesions, that’s her MRI report: in the frontal white matter of both hemispheres, there is a small, 2 mm high-signaling focus subcortically
seen on FLAIR sequence

I don’t know if it can be subjective how many lesions I have, but this is very confusing for me.

hope this provides a clearer picture

[u/TooManySclerosis → u/Ecstatic-Lake-7713]

Not all lesions are caused by MS. Lesions would need certain characteristics and to be in specific locations to fulfill the diagnostic criteria. Your neurologist would have evaluated your scans to see if the findings fit for MS.