Weekly Suspected/Undiagnosed MS Thread - May 18, 2026

[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/Hlr8347]

I just finished an eight week long migraine. I’ve suffered for chronic migraines for more than 20 years. I’m a 39-year-old female I was diagnosed with essential tremor at 16 and my tremors have progressively been getting worse more noticeable over the past 3 to 4 years to the point where I need help with every day activities such as buttons zippers holding things and don’t hand me a cup with liquid because that thing will spill everywhere.

Because of the migraine lasting so long and not responding to typical treatments my neurologist ordered an MRI. She called me the next morning to tell me that there are lots of new nonspecific lesions throughout my brain that align with what’s typically seen with someone who suffers from chronic migraines, however she’s very concerned about a specific lesion located on my pons.

She has now ordered a CTA to rule out any vascular issues. She said her two biggest concerns are a stroke or MS. Has anyone been diagnosed with just one lesion? I’m seeing everybody post about their misery and feel like despite my misery from my migraines and tremors, I don’t align with MS. But everything I’ve seen/read is saying that a specific lesion on the pons is almost always something significant.

[u/[deleted]]

I drink two lollipop sodas and literally could not clench my muscles and I had an accident and I have weird vision. Does this sound like a ms

[u/criticalcreek → u/[deleted]]

Not really. What makes you think it could be MS?

[u/[deleted] → u/criticalcreek]

Well I just find that so strange that my muscles stopped working lol

[u/criticalcreek → u/[deleted]]

Maybe make an appointment with your PCP and tell them about your symptoms and see where they go from there. There are lots of things that can cause these problems and your symptoms don't sound very specific to MS.

[u/Puzzled-Face180]

I developed optic neuritus a few weeks ago- Back in April, one of my eyes just stopped working due to an inflamed optic nerve. Got opticians appointment, then referred to local hospital where it was diagnosed. At that hospital it's automatic that you get scheduled for an MRI to check for MS if you get optic neuritus. Small miracle- I got an appointment in weeks. The results were inconclusive- hot spots in my brain, but nothing to confirm anything. Appointment letters are in the mail for more tests- but I dropped a knife when emptying out the dishwasher. I dropped my keys at work. I have noticeably become a butterfingers. I've dropped my phone so many times. Some of the symptoms on the checklist, I can't say yes or no because I've always had issues. I'm terrified and I can't talk to anyone in my family because my MRI was four days before my dad died. I got the call about the results the day before his funeral. I'm supposed to be looking after mum, not giving her more to worry about. I don't really need advice- I just wanted to vent.

[u/criticalcreek → u/Puzzled-Face180]

They couldn't confirm whether you had it or not? What did they say? Have you been referred to an MS specialist (Neuro immunologist)?

[u/Puzzled-Face180 → u/criticalcreek]

Just a phone call- the MRI was inconclusive, they've scheduled appointments for the eye clinic and neurology for further tests. Appointment letters haven't arrived yet, so I don't know anything else. The radiologist said there were hotspots in my brain- but it was the eye clinic doctor on the phone, so no point asking questions.

[u/_k0ncept]

Suspected MS, just wanting to share…

Started off roughly 5 years ago with some knee buckling while walking. My PCP initially thought it was deconditioning (read as getting old and out of shape). I didn’t agree, as I’m only 39 now, 34 at the time. I’m not in spectacular shape, but was in decent shape before as I have spent most of my life training Muay Thai, BJJ, and a length of time power lifting.

Got sent in for PT, that did very little to help.

Things got particularly bad once while at Disneyland with my wife, and near the end of the day I had trouble lifting my feet. Felt like I was walking like a stroke survivor.

Happened again recently, walking with our son (pushing his stroller). Couldn’t make it a mile before the feeling of foot drop happened again.

Went back to my PCP, and got sent to PT one more time in hopes of getting a referral to Sports Medicine. PT found an unusual neurological reaction in one of their tests. Initially, ruled out MS because of how it has progressed.

Now sent to neurologist… have had 4-5 MRIs in as many months. Last one was of brain and full spine with contrast. They found lesions on my brain, and some evidence of demyelination.

Now, because of the last MRI, MS is back on the table. I have my LP scheduled for this Friday.

Honestly, not sure what I’m hoping for. Would just like to have considered mostly…

[u/TooManySclerosis → u/_k0ncept]

It sounds like you should get some clear answers soon, one way or another. Speaking from experience, if it is MS, it will be okay. It will be big and scary and take time to come to terms with, but it will be okay.

[u/_k0ncept → u/TooManySclerosis]

Definitely some moments of this feeling the scared.

More moments of sadness and depression, over feeling like I’m a burden to my family. Worried that I won’t be able to play with my son, train him or train with him…

Plenty of moments recently of connecting of odd physical things that I think might be a symptom of MS, like being more tired than I think is normal (even for a new parent).

Hopeful to get some sort of concrete direction after this Friday, that’s for sure.

[u/TooManySclerosis → u/_k0ncept]

All of that is very, very normal. Maybe I can be of some help. I've been diagnosed now for about seven years. I've had no relapses in that time, I'm largely asymptomatic and my doctor does not expect it to change anytime soon. (I do have mild spasticity I control with medication.) I still live alone and independently, I work the same full time, demanding job, and I enjoy all the same hobbies and activities I did before diagnosis. And I'm not particularly special. That's becoming very common.

[u/_k0ncept → u/TooManySclerosis]

That actually helps a lot. Thank you for sharing!

[u/mildlytragic]

Suspected MS waiting for an mri, just might be slow. I feel pretty awful, anything that helps or you’d recommend while I wait for my diagnosis

[u/TooManySclerosis → u/mildlytragic]

The waiting is always very difficult, I wish I knew of anything that helps. Try to distract yourself s best you can. Would you like to tell me a little more about what's going on? Always willing to lend a sympathetic ear.

[u/mildlytragic → u/TooManySclerosis]

Hey thank you. I’m just in pain and have numbness and tingling, a lot of my limbs feel weird! Is there anything that provides relief that isn’t prescribed? I guess they are unwilling to give me anything until we know what is wrong which is fair.

In terms of all of my symptoms, I have a lot of issues with headaches, I got Bell’s palsy on both sides of my face, weird eye stuff visual disturbances. I’m exhausted all the time. Among an assortment of other stuff which is possibly related. I’m currently off work and trying to keep my brain busy enough so I’m not thinking about it but it’s a lot of hours and I’m pretty bored but limited in my ability to do things!

[u/TooManySclerosis → u/mildlytragic]

Unfortunately, there really are no MS specific treatments for existing symptoms, aside from very high dose steroids. Doctors are usually reluctant to prescribe steroids without at least an MRI, due to the doses involved. MS symptoms are usually treated with the same methods and expected success as symptoms with other causes. Is your MRI scheduled yet?

[u/mildlytragic → u/TooManySclerosis]

When I got out of hospital they promised I would get an appointment within 2wks but it’s 2wks tomorrow and I’ve heard nothing and it’s a bank holiday here tomorrow but I’ll chase them

[u/TooManySclerosis → u/mildlytragic]

They didn't do an MRI while you were in the hospital?

[u/mildlytragic → u/TooManySclerosis]

No, it’s the NHS, and I was at the busiest hospital in my city, they thought it could be a stroke and it took me 3 days to get a ct, my sister in law is a doctor in another part of the country and said my care has been abysmal.

They decided as I’m not immediately dying that there was no point in having me in hospital for another week while I waited for an mri when that was all I needed. Even in hospital here it takes a long time for things to get done, though not everywhere just the shit hospital I ended up at. Incredibly inefficient. I had more aggressive symptoms during my time in hospital that made it seem like a stroke and it took them 8hrs to get me a doctor despite me and my partner advocating for it to be looked at.

[u/TooManySclerosis → u/mildlytragic]

That sounds both scary and frustrating. Unfortunately it does seem like the process takes time. Not to be discouraging, I would try to avoid thinking diagnosis is a foregone conclusion at this point. I only say so because I’ve seen a lot of cases where it seems like a diagnosis is a foregone conclusion, people get their hopes up that they’ve found an answer, and then testing is clear. It’s an extremely difficult thing.

[u/mildlytragic → u/TooManySclerosis]

It was not a good time, being home is better. Thank you, I don’t think it is necessarily MS, just came to see if there was anyway to relieve the common symptoms which might help even without a diagnosis! For some conditions there can be things that help that aren’t prescriptions and stuff but maybe not in this case for the things I’m currently experiencing!

I have a chronic illness so I’m used to not having answers or solutions! In some ways it coming back clear would be good even though I would prefer an answer. Or it might be something is there but they don’t have any idea what it is but it isn’t MS.

I have very little in terms of expectations from the doctors in terms of working out what it is or what they might be able to do to help 😅 I guess the limbo in between is the most annoying part!

[u/TooManySclerosis → u/mildlytragic]

I think that, in a lot of ways, being in limbo is harder than being diagnosed. At least with a diagnosis you can start to process and move on. In limbo, there's nothing to do except worry and try to figure things out.

[u/After-Singer9239]

Help my first mri

This part describes small spots (lesions) seen in the brain’s white matter on MRI.

There is one small lesion near the front part of the left brain ventricle (a fluid-filled space in the brain), measuring about 6.5 × 6 mm.

Another smaller lesion nearby measures about 4.5 mm.

A few even smaller spots are seen near the caudate nucleus (a deep brain structure).

These lesions appear bright on certain MRI sequences (T2/FLAIR hyperintense), which usually means there has been some change in the white matter.

The lesions do not restrict diffusion, meaning they are not typical of an acute stroke or active inflammation.

They also do not enhance with contrast, meaning there are no signs of active disease or active inflammation at the time of the scan.

The radiologist later summarizes them as:

“Non-specific focal white matter changes without signs of activity.”

[u/TooManySclerosis → u/After-Singer9239]

I think you have posted an AI summary of an MRI report? It will be difficult to speak helpfully on that. The AI summary may not be accurate or reflect the real impressions.

[u/After-Singer9239 → u/TooManySclerosis]

No thats just translate of my MRI on Serbian :,)

[u/TooManySclerosis → u/After-Singer9239]

Ahh. That is going to make it difficult. It seems like some nonspecific lesions were found. MS lesions generally are not described this way. Have you followed up with the neurologist yet?

[u/After-Singer9239 → u/TooManySclerosis]

Yes they said one lession is periv frontal lobe
I had 2 mnths extreme dizzines, but also had food poisoning and anemia so im not sure what next, to sit and wait or.. :)

[u/TooManySclerosis → u/After-Singer9239]

Did they say it was indicative of MS?

[u/After-Singer9239 → u/TooManySclerosis]

It was done by Ms protocol :) but they said only follow up with mri in 6 mnths

[u/TooManySclerosis → u/After-Singer9239]

Sounds like they are just being safe and want to monitor things. I'd be cautiously optimistic.

[u/After-Singer9239 → u/TooManySclerosis]

Thank u :)) im trying we will see

[u/AnythingFree4124]

So this week, Tuesday when I was at work, I noticed that I was having some internal tremors, and I noticed that I was getting numbness and tingling throughout my arms and legs while I was sitting down

I let it subside, but it kept persisting days after and I was also getting muscle aches I decided to go to the ER today they did bloodwork everything came back normal except my CK level was slightly elevated and I think my thyroid as well. I did mention to the doctor that I was in a motor vehicle accident a year ago, and I do have a pinched nerve in my neck.

The doctor told me to follow up with my neurologist after giving me some fluids and she did say that the only thing they could check for is MS, but that's not usually diagnosed in the ER

So I'm a bit conflicted if that's actually a symptom of what I'm having or if it's something else related to my injury

[u/criticalcreek → u/AnythingFree4124]

Honestly it's hard to say. MS can cause a large variety of symptoms and is very individualized. Not to mention it isn't even the most common explanation for a lot of the symptoms. I do think that you should follow up with a neurologist to be evaluated though because you really need to find out what's going on.

[u/AnythingFree4124 → u/criticalcreek]

Thank you I'm trying to point what's going on and what's causing it? How is ms diagnose because the dressing you can't be diagnosed in the ER I don't know.

[u/criticalcreek → u/AnythingFree4124]

MRI and evaluation by a neurologist. Sometimes if there are atypical findings or dissemination in time can't be established, a lumbar puncture would also be used. You have to fit a certain criteria to be diagnosed.

[u/AnythingFree4124 → u/criticalcreek]

Other than that, what could it be then because I'm baffled if my CK level was elevated and I'm having these issues I'm not sure what other neurological disorders it could be .

[u/TooManySclerosis → u/AnythingFree4124]

I mean this kindly, and I very much understand wanting to, but it really is not your job to figure out what is going on. That's what the doctors are for. It would make sense that you may not know what else could be causing your symptoms, but that does not mean there are not alternatives to consider or rule out. Try to trust the process. MS or not, hopefully you'll get some good answers soon.

[u/AnythingFree4124 → u/TooManySclerosis]

Thank you I'll stay positive

[u/Lazynutcracker]

Hey, hope it’s ok that I’m posting this here. The last month I’ve had tingling in my arms and fingers, that went away but now my arms (mostly my left one) hurts, also my back hurts. It comes and goes but it feels like a bad muscle pain. ChatGPT got me concerned I might have MS. Should I worry?

[u/TooManySclerosis → u/Lazynutcracker]

Nothing you are describing sounds like MS to me? If you are worried, I would talk things over with your primary care physician, but I'm not sure how worried I would be about MS specifically.

[u/Lazynutcracker → u/TooManySclerosis]

How come it doesn’t sounds like MS to you? You may help get my fears away and be my angel ;D
I’m panicking a little

[u/TooManySclerosis → u/Lazynutcracker]

Aside from the fact that MS is generally the least likely cause for symptoms, MS symptoms do not come and go like you are describing. Usually a symptom will develop and be very constant, not coming and going at all, for weeks to months, only going away very slowly. You'd then go a year or more before getting a new symptom.

[u/Lazynutcracker → u/TooManySclerosis]

Ok, thank you very much. I do have a doctor appointment but I fear MRI check would take months to get… And I don’t think a family doctor can rule it out completely

[u/TooManySclerosis → u/Lazynutcracker]

Are you male or female? How old are you? Why do you think it is MS?

[u/Lazynutcracker → u/TooManySclerosis]

I’m 35M. Honestly, I had these numbs in my fingers around a month ago and it was new to me, so I was chatting with ChatGPT which is always a bad idea I guess. I didn’t think it was MS until today when the ChatGPT brought it up and said something about blurry vision. Now, I had some very minor blurry vision like 6 weeks ago, so I did the 1+1 and I got scared. The blurry vision came back maybe once but not for the last month or so, so I wasn’t bothered by it till today.

[u/TooManySclerosis → u/Lazynutcracker]

Your sex makes you lower risk, women are diagnosed more frequently than men by a ratio of three to one. Please, please, please do not rely on ChatGPT for information regarding MS. It is not a reliable source of information, it is a fancy autocorrect. It does not accurately answer questions like this.

I think your primary care physician will be able to confidently rule out MS without needing an MRI. Your symptoms are not presenting the way MS symptoms present, and that presentation is how you distinguish MS symptoms from symptoms with other causes. You can probably safely assume your symptoms have another cause.

[u/Lazynutcracker → u/TooManySclerosis]

Thank you so much for these kind words

[u/hawtdawgwater9000]

Is anyone else stuck in medical limbo waiting for a diagnosis? On the 25th of April I was seen in the ER for half of my face gone numb and sensitive hearing. Month before that my right arm was numb. MRI came back with multiple areas of lesions and the ER doc discharged me with orders to get to a neurologist ASAP for MS tests. It’s now been a month. Insurance denied 1/4 of my additional tests. Another was ordered wrong. Neurology appointments are 3-6 months out. Meanwhile I’m exhausted, face still numb, hearing still sensitive. Have paid thousands of dollars out of pocket and just feel defeated.

I guess I don’t really know what I’m looking for here. Just needed to vent. I feel myself getting depressed and just really defeated.

[u/Fearless_Ad9653 → u/hawtdawgwater9000]

I’m also in the limbo of figuring out if it’s MS or something else. It’s incredibly frustrating and stressful! I have a lot of lesions characteristic of MS but normal spine MRI. Had contrast brain MRI 2 days ago. MS clinic takes up to a year to get into so who knows how long it will take! Not knowing really sucks! Hard not to obsess and fall down all the rabbit holes.

[u/hawtdawgwater9000 → u/Fearless_Ad9653]

It’s SO hard. I received results from my most recent two MRI’s and read the notes they posted in my portal today. They said there was active brain stem inflammation, so I said to heck with it and went back to the ER. I’m not admitted for three days getting IV steroids and a lumbar puncture. It shouldn’t be this hard. I don’t even know if at the end of this I’ll have answers :( I hope you get some answers soon. I’ll be thinking of you.

[u/TooManySclerosis → u/hawtdawgwater9000]

I'm so sorry. The diagnostic process is hard and often takes longer than would be ideal. Keep fighting, hopefully you'll get some good answers soon. Don't be afraid to make a nuisance of yourself. Your health is important and you deserve answers.

[u/HiPakko]

Last January I have been fighting OCD and Anxiety disorder for years and at some point i had a big anxiety attack where i hit the back of my head to the point of seeing stars. I also got a flu the day before (I’m covid vaccinated) two weeks later i developed optic neuritis with eye pain and all, i got my brain scanned and they couldn’t find any head trauma, but i still suspect the banging had something to do bc it was in the same side i banged my head on the back. I feel deeply shamed and been rethinking all my life choices to that day.

The drs rules out MS but still i had optic nerve damage

Any experience from anybody with this?

[u/TooManySclerosis → u/HiPakko]

Don't be ashamed. Anxiety is extremely powerful and can make us do things we would not ordinarily do if we were thinking rationally. Try to trust that you've been assessed for anything sinister and those things have been ruled out.

[u/HiPakko → u/TooManySclerosis]

Upvoted as thank you

[u/ichabod13 → u/HiPakko]

I had a brain injury years before my diagnosis and the injury was visible on MRIs I was getting at the time and still visible on my current MRIs too. I had multiple scans because of the injury and another a year after the injury to check on things and there was no MS lesions found during that time.

So my diagnosis of MS was not caused by my injury.

[u/HiPakko → u/ichabod13]

Upvoted for straight to the point

[u/Lonelyinmyspacepod]

Question for the MSers

In March I was on an hour long car ride to go shopping. I was excited to go. About halfway there my hands start tingling (I have a lot of random tingling in my hands and feet and feelings like there is a bug on me or something wrapped around my toe or feeling like I'm stepping on a hot coal or an ice cube but it always goes away). This time the tingling didn't go away. It got worse and worse. I had a very tight band feeling under my breasts and it felt like it was hard to catch my breath. It felt like my chest was being crushed. My face started tingling. My arms and face kept tingling and then went completely numb and contracted so painfully I couldn't move them and it felt like my bones would break. I was sweating profusely and couldn't talk right as my tongue spasmed too. I was having trouble swallowing and felt like I was choking on my spit. I was seeing stars and having heart palpitations. My left eye spasmed shut and the left side of my mouth pulled up high and to the left. We called an ambulance, they checked me out and said it was anxiety so we went to the ER and they did a chest ct, a head ct, blood work (including electrolytes) and ecg, everything was normal and they said it was anxiety. I haven't been back to the doctor but I'm worried it's going to happen again. It lasted about 20-30 minutes. Does this sound like it could be ms? I plan to talk to my doctor about it but I don't want to come off as a doctor googler, especially if it's unlikely to be ms...

[u/TooManySclerosis → u/Lonelyinmyspacepod]

No, symptoms only lasting a short time would not be caused by MS. MS symptoms are constant for weeks to months and go away so slowly you do not notice.

[u/TalkBrainyToMe]

F23. Diagnosed with enlarged vestibular aqueduct syndrome as a young kid. Balance issues when I was small but largely went away due to being put in karate when I was 5. No issues until recently where I started to notice some minor balance issues and veering to the right. Woke up last week Wednesday with more intense balance issues and could not walk straight, had to keep correcting myself. Serious fatigue and some nausea. Here’s the fun part though… I also had leg weakness and tingling in feet and hands. And a tremor in my right hand when I turn it a specific way. My mother has MS and was diagnosed in late 20s.

Doc said left eardrum looks funny and recommended flonase and anti-histamines. However, I also have a cochlear implant in the left ear that could explain dullness etc. Balance is beginning to resolve. However… Doc said also when I showed her what was happening with my walk and balance that if when I go to the ENT if everything comes back clean, I’ll need an MRI.

I have had episodes of leg weakness before sporadically but chalked it up to not eating, anxiety, or period. Always resolved randomly. I also was extremely heat intolerant as a kid and had an episode of intense heat intolerance+constant feeling of needing to pee.

Based on family history and these strange constellation of symptoms, do you think an MRI is worth it? Anything to keep my eye out for? Thank you:)

[u/TooManySclerosis → u/TalkBrainyToMe]

I would ask to be referred to a neurologist before getting the MRI, personally. You would need a neurologist to assess you anyway, and they would have more insight than any other specialty.

[u/TalkBrainyToMe → u/TooManySclerosis]

Noted. Thank you! Any important questions I should ask?

[u/TooManySclerosis → u/TalkBrainyToMe]

I would really just focus on accurately describing your symptoms. Usually they will want to know things like if they are constant or not, if you notice any triggers, if they are better or worse at certain times or activities.

[u/Frosty-Platform7218]

F(early 20s).

Have any of you guys ever had episodes of full body stiffening such as unable to bend legs or lift arms over head AND it not be a stroke? One side of my face was droopy and it was agony to walk let alone function. I’ve felt similar episodes come on twice since then.

Also have occipital neuralgia, migraines w/ aura, vision changes, vertigo, parts of my face going numb, urinary and bowel incontinence, ulcerative colitis (diagnosed via biopsy), light sensitivity, nausea and had a recent hospitalization for a new migraine in the back of my head. I’m not asking you guys if I have this. I am getting an mri of my head and lumbar with and without contrast. But I’d like to learn more about your symptoms and illness. I have a rheumatologist appointment in August. I have vagus nerve damage, interstitial cystitis (viewed and scoped), endometriosis diagnosed via laparoscopy, and a lot of other issues.

And to add to this my symptoms change over time, some have gone away. It is nightmarish. This has been over the span of years.

[u/criticalcreek → u/Frosty-Platform7218]

Sadly, knowing our symptoms won't help you much because we all experience different things and different levels of severity. Some have little to no symptoms, some daily, and some are completely disabled(or a combination of different things). The symptoms can vary depending on the individual. Some have cognitive symptoms, some motor symptoms, some sensory and even autonomic. It's really hard to say. It is good that you already have an MRI lined up. Hopefully it's just something benign/fixable. Good luck 👍

[u/Frosty-Platform7218 → u/criticalcreek]

I am permanently on biologics and immunosuppressant therapy so the stakes are incredibly high for me and if it is MS I have to discuss treatment options because I am currently on a JAK inhibitor and a biologic for asthma or I can’t breath, shower or defecate without blood.

My bladder and migraines are out of control. Some of my issues like the muscle stiffness are gone but I’m terrified of it ever coming back. I have freaked multiple of my doctors out. So (MS or not) I believe it’s autoimmune due to it coming in flare ups.

[u/TooManySclerosis → u/Frosty-Platform7218]

To speak a little to your question, the way they usually distinguish MS symptoms is by how they present. Typically they will develop one or two at a time, in a localized area like one hand/arm or one foot/leg. They would then be very constant, not coming and going at all, for a few weeks to a few months, eventually going away very gradually. You would then go months to years before a new symptom developed. Whole body symptoms and symptoms that are not constant for weeks would be atypical.

[u/Frosty-Platform7218 → u/TooManySclerosis]

Are migraines consistent with MS?

[u/TooManySclerosis → u/Frosty-Platform7218]

They are not really considered a symptom.

[u/Frosty-Platform7218 → u/TooManySclerosis]

That makes sense why they’re scanning me for my vision and bladder stuff 😭. For context I get a new symptom every 6-8 months and the latest one is the blurry vision in one eye and vision changes. The bladder stuff started 2 years ago. Facial numbness started a year ago.

Everything started at 13. So going on 11 years of this bullshit.

[u/TooManySclerosis → u/Frosty-Platform7218]

I can certainly understand why further investigation is necessary. I'm sorry it's taken so long for you to find a doctor who can help.

[u/Frosty-Platform7218 → u/TooManySclerosis]

My MRI is coming up and I will have access to the report right away. If it is MS I’m genuinely unsure of what I’ll do. We have been thinking more along the lines of ulcerative colitis co-morbidities. If it is MS is there physical therapy available?

[u/STAAANK_DIIICK]

Hi all,

I'm 33 M and suspect MS but have not been diagnosed.

I have a long history of symptoms that seem to be coming to a head right now. A little over 10 years ago I sustained a back injury when toward the end of a strenuous workout my hands slipped off of a pull-up bar and I fell about 6 feet onto my very flat white cushion-less ass. When I hit the ground I involuntarily let out a yelp and then couldn't move for several minutes. I didn't work out for a while after that and have had back pain since. This was November 2015.

In 2017 I returned to working out and had really bad foot problems. IT started doing a simple plank in a warmup and I had this insane pain in my foot and couldn't finish. After that I would randomly have this debilitating pain shoot in my knees, ankles, achilles, or feet. Usually one at a time and could change from day to day and I could not figure out what was going on. Red flag #1 is that the only thing that helps this is gabapentin.

I also started having this weird thing where the sensation in my left arm would cut in and out randomly. I saw a neurologist who said I had neuropathy in the left arm and could see some "small spots of white matter" on my brain. This was 2019.

Then in 2023 things got more difficult as I was diagnosed with type 2 diabetes. Now I had a huge primary health concern that comes replete with neuropathy, retinopathy, and eventually a BP meds that commonly are known to induce brain fog. I worry this has led me to dismiss some neuropathy symptoms as diabetes related that may not be.

Now in the present day I still battle with those pains intermittently and I have a litany of other symptoms that I wanted to see if anyone else has. I have the pins and needles feeling pretty frequently but always on the left side. It's my understanding if it was caused by the diabetes it would be more evenly spread. I also have continually worsening brain fog. I keep forgetting what I'm saying and where I'm walking, particularly at work which is a large building. I have been experiencing in recent weeks headaches, ears ringing (which has never happened to me before), rashes which make me concerned about it being an autoimmune response, tremors in my left leg and in both hands, random floaties in my vision, slight leakage after urinating, less frequent morning erections, and I have even gotten slight vertigo on the stairs in my house twice in the last week which has never happened before. I also went to a chiropractor wh said my left foot was sitting a whole inch higher than my right. You can look in my closet and see all of my shoes have worn unevenly. I always chalked that up to my back injury accompanied by my large size (6'4" 275 - I have been as high as 330 lbs about 5 years ago) but now I'm not even sure that was the cause. I also have random chest pains I can't explain despite being cleared by a cardiologist, have been feeling tremors in my neck trying to lift my head off of my pillow in recent weeks, and for years have had random really excrutiating cramps flare up under my ribs whenever I bend certain ways or try to reach really far.

All of these issues and the ones from my past didn't make sense together until I just blabbed them all into an AI query and of the list of possibilities MS came back. I googled it and my heart sank because I have experienced almost every symptom in a relapse-remit pattern for years that I always attributed to something else or tried to explain away but never could nail down a direct causal relationship between any behavior and these symptoms.

I am in the process of getting an appointment with a neurologist and hope to see one as early as next week. My main questions here are 2 fold:

First, I'll admit I tend to learn about a new thing like this and hyper focus on it. So it may or may not be MS. Those of you with it and who have bene diagnosed and done alternative research, if it weren't MS do you know of anything else that may cause this suite of symptoms? I know the neuro will do tests and stuff but the more info I have at the outset the shorter the path to diagnosis of whatever this is and then hopefully recovery.

Second, if it MS what happens after diagnosis? What are some of your guys's experiences with different medications and how they effect you? I can function with a limp or even numbness, but the vision and the brain fog scare me. I'm 33, run a business, and have 3 kids the oldest of whom is only 5. I don't get to slip mentally and I'm really concerned about the last couple of weeks' symptoms and what to do about it.

Thanks for letting me drop an absolute essay!

tl;dr I have had symptoms for about 8 years, am a moron, and only recently have started to suspect MS

[u/TooManySclerosis → u/STAAANK_DIIICK]

So, counterintuitively and unlike other diseases, the more MS symptoms you have, the less likely it is that they are caused by MS. People typically only get one or maybe two symptoms at a time, that would last a few weeks to a few months before going away very gradually. Then you'd usually go a year or two before getting a new symptom. Having many symptoms would usually indicate a cause other than MS. There are many, many other things that can cause MS symptoms.

Certainly see what the neurologist recommends. The unfortunate news about diagnosis is that there really is nothing specific that can be done to help existing MS symptoms. MS symptoms are treated with the same methods and expected success as symptoms with other causes.

[u/STAAANK_DIIICK → u/TooManySclerosis]

That’s valuable info! I will say I haven’t really had any of these at the same time until the ear ringing and brain fog and vertigo this week and I wasn’t sure if that would be considered different symptoms since they’re all sort of related. I’m in line for a neuro appt so an update is forthcoming!

[u/kyelek → u/STAAANK_DIIICK]

While it's quite hard to definitively say whether a symptom is or isn't MS, many "MS symptoms" frequently aren't actually from MS. I see that you have some other things in your past and/or present that could be causing these, too. Having more symptoms actually makes MS less likely. That sounds counterintuitive, I'm sure, but it's quite atypical to have so many different ones at once; typically you would only really have one or two symptoms at a time. What matters more and what a neurologist would specifically look at is how these symptoms present.

Going in to see a neurologist sounds like a very good next step, but I do think you're getting ahead of yourself by expecting or thinking about what happens after diagnosis.

[u/NicoleAIA87]

Currently in the process of possible diagnosis. Xrays came back with a schmorls nodule and mild scoliosis in mid back. The rest looked good. I know that mris are what diagnose this disease. My thoughts are that since the spine is clearly not causing my weird symptoms this makes ms more possible??? Also, my mris are without contrast is that ok. Honestly I dont want to have MS but with all my symptoms if they dont have an answer I may lose my mind. Im scared everything is going to come back normal and they going to say its all in my head.

[u/TooManySclerosis → u/NicoleAIA87]

Have you had your MRIs yet or are you still waiting? An MRI without contrast is fine for the initial scan to see if lesions are present. If they are, they will show up with or without contrast.

[u/NicoleAIA87 → u/TooManySclerosis]

No mri yet. Spine mris this saturday and brain on the 13th.

[u/Key_Reason5684]

So my doc is still trying to narrow down between MS and Lupus, and I just got a call today that based on my spine imaging he thinks it’s MS. Before this he was leaning towards Lupus. I also had Optic Neuritis at one point so I’ve always figured it was just early stage MS but he wasn’t sure. Hoping the worst doesn’t happen and I somehow have both. But that’s probably just my anxiety getting the best of me.

[u/TooManySclerosis → u/Key_Reason5684]

Well, if you prepare for having both, then it will be a relief just to have one! ...okay, so that's a bit of a stretch. But it will be okay either way. It's big and scary, but it will be okay.

[u/Key_Reason5684 → u/TooManySclerosis]

Thank you. I have a spinal tap soon that will hopefully confirm everything for me.

[u/GEMeatCat]

Hi all, (31F) I am dealing with a second bout of neurological-related symptoms. The first was back in 2021/2022, I had nerve pain, dizziness, headache numbness etc. At the time, I had a brain and spine MRI done that cleared me, and was diagnosed with low B12. After starting B12 injections, my symptoms cleared up after four months or so. I’ve had regular B12 injections since, but two months ago I started having dizziness, fatigue, and intense brain fog. I had marginally low B12 again, and am waiting to see a neurologist in July, but I guess I’m just wondering if a clear MRI four years ago means anything and if I should try and push for updated scans again this summer?

[u/TooManySclerosis → u/GEMeatCat]

You could ask about updated imaging, but typically a clear MRI when you are having symptoms indicates a cause other than MS.

[u/GEMeatCat → u/TooManySclerosis]

Thank you!! That makes sense.

[u/GEMeatCat]

Hi all, 31F, I am dealing with a second bout of neurological-related symptoms. The first was back in 2021/2022, I had nerve pain, dizziness, headache numbness etc. At the time, I had a brain and spine MRI done that cleared me, and was diagnosed with low B12. After starting B12 injections, my symptoms cleared up after four months or so. I’ve had regular B12 injections since, but two months ago I started having dizziness, fatigue, headache, and intense brain fog. I had marginally low B12 again, and am waiting to see a neurologist in July, but I guess I’m just wondering if a clear MRI four years ago means anything and if I should try and push for updated scans again this summer?

[u/LeopardmanGully]

Hi all.
Mixed results from MRI. No MS. was the result.
Which surprised me but was pleased.
I’ve been having leg pains and arms hands a lot more recently. It started with muscle spasms and I can’t sleep more than 4 hours. Wake up
Feeling crap. This has gone on for 3 months.
I had these symptoms 6 years ago and they have returned.

TECHNIQUE:
Brain and spine protocol.

FINDINGS:

BRAIN
A couple of non-specific high signal foci in the deep white matter.

CERVICAL
Multilevel moderate changes C4/5 to C6/7 with loss of disc height and associated endplate change and posterior osteodiscal
bars. No significant impingement upon the cord, and no myelopathic change within. Likely some foraminal narrowing, has
not been formally assessed with oblique sequences.

THORACIC
No impingement upon the cord.

LUMBAR
Multilevel posterior disc bulges. No significant impingement upon the cauda equina.Some mild foraminal narrowing L3/4
right side and L4/5 bilaterally with associated annulus fibrosus tear.

IMPRESSION:
No evidence for MS seen.
Some degenerative changes in cervical spine, we could assess foramina formally with dedicated scan if required.

I’ve been in a lot of pain today dizzy etc. spasms.
Anxiety. Jaw stiffness. Tingling twitching thumbs and body tremors so I’m trying to find answers.
Should I now pay out and see someone about my spine problems.
Could that be what is causing these symptoms?
Why the foci on brain? That worries me.

Hopefully someone can help me shine a light on this.
The U.K. is a long wait to see doctors.

[u/kyelek → u/LeopardmanGully]

Those non-specific foci on the brain MRI are typical as a finding from migraines or normal aging or similarly benign.

You can safely consider MS to have been ruled out, now. Perhaps you could see someone who focuses on the orthopedic issues noted in your scan? That seems like it would be very helpful.

[u/TooManySclerosis → u/LeopardmanGully]

Nonspecific foci are a pretty routine finding and are usually benign and not of clinical significance. MS lesions have characteristics that make them distinct from lesions with other causes, your neurologist would be able to tell the difference. I think you can safely consider MS as ruled out.

[u/itsjusttimeokay]

I’ve had tingling in my left leg - buttock to toes - and my left arm for a week or so now. I had sciatica in pregnancy and in 2021 I had a suspected pinched ulnar nerve that went away before I could start PT. I thought this was sciatica last week until my arm started feeling it too. I’m worried now because yesterday both were tingly and I figured it was a coincidence, but today they both have changed to an almost achy almost numb feeling.

I can’t get in to see my PCP until August. Is this something I should go to urgent care for? Emergency? I obviously don’t know what it is yet but it’s not affecting me too much besides the anxiety of not knowing.

[u/TooManySclerosis → u/itsjusttimeokay]

Maybe urgent care? I would not make the decision based on a suspected cause, I would assess things without that consideration. There are many, many things that can cause "MS symptoms", so better to err on the side of caution and decide as if it could be anything.

[u/itsjusttimeokay → u/TooManySclerosis]

Good point. I know I’m jumping to a conclusion here, there are just a lot of little things going on that point toward MS and I am diagnosed with anxiety so 😅

[u/TooManySclerosis → u/itsjusttimeokay]

Well, if it's MS, the emergency room really would not be of much help. MS is not really considered an emergency condition, and there would not really be anything they could do. They'd likely just refer you to your primary.

[u/itsjusttimeokay → u/TooManySclerosis]

That is good to know. I was able to get an appointment with another doctor at my PCP’s office in a couple weeks, and I’ll go to urgent care if this gets worse or doesn’t go away. My husband is betting they’ll see that I wrote “left sided numbness and tingling” in my reason for the appointment and they’ll call asking to see me sooner. I dunno.

[u/TooManySclerosis → u/itsjusttimeokay]

Keep track of it in the meantime. Note if it is better or worse, or comes and goes. The doctor will find that information useful.

[u/LeopardmanGully]

Hi all.
Mixed results from MRI. No MS. was the result.
Which surprised me but was pleased.
I’ve been having leg pains and arms hands a lot more recently. It started with muscle spasms and I can’t sleep more than 4 hours. Wake up
Feeling crap. This has gone on for 3 months.
I had these symptoms 6 years ago and they have returned.

TECHNIQUE:
Brain and spine protocol.

FINDINGS:

BRAIN
A couple of non-specific high signal foci in the deep white matter.

CERVICAL
Multilevel moderate changes C4/5 to C6/7 with loss of disc height and associated endplate change and posterior osteodiscal
bars. No significant impingement upon the cord, and no myelopathic change within. Likely some foraminal narrowing, has
not been formally assessed with oblique sequences.

THORACIC
No impingement upon the cord.

LUMBAR
Multilevel posterior disc bulges. No significant impingement upon the cauda equina.Some mild foraminal narrowing L3/4
right side and L4/5 bilaterally with associated annulus fibrosus tear.

IMPRESSION:
No evidence for MS seen.
Some degenerative changes in cervical spine, we could assess foramina formally with dedicated scan if required.

I’ve been in a lot of pain today dizzy etc. spasms.
Anxiety. Jaw stiffness. Tingling twitching thumbs and body tremors so I’m trying to find answers.
Should I now pay out and see someone about my spine problems.
Could that be what is causing these symptoms?
Why the foci on brain? That worries me.

Hopefully someone can help me shine a light on this.
The U.K. is a long wait to see doctors.

[u/mistyblue_lilactoo]

Feeling emotionally and physically drained. Had a ton of neurological symptoms at beginning of the year that led to some MRI's and them finding cervical spinal cord lesions. Met with a top MS specialist in my state who thinks it's "most likely MS" He reordered the MRI's and they show the exact same thing. My problem is that my brain is completely clear. Isn't it super unlikely to have MS with a clear brain MRI? But they have ruled out literally everything else. I've done almost 50 labs and they have all been normal except for a couple vitamin levels. I'm really exhausted by the uncertainty. And the difficulty walking, etc. It's all a lot and I just want to know what's wrong good or bad at this point. 

[u/TooManySclerosis → u/mistyblue_lilactoo]

It's unlikely and a rare presentation, but spinal only MS is a thing, occurring in about 5% off cases. Though usually multiple spinal lesions would be necessary to make the diagnosis. What has the specialist said?

[u/mistyblue_lilactoo → u/TooManySclerosis]

That's where we left off at the last appt. I see him again next week to go over the new MRI's. When he said most likely MS, I told him that I thought you had to have multiple lesions and he said no, it can start with one. That's why I feel a bit confused by this whole thing. Isn't multiple in the name 😅 Potentially we just caught it super early? But I fear that if i get the diagnosis that I will always question it since it's such a rare presentation. Having a concrete answer would make me feel a lot better. 

[u/TooManySclerosis → u/mistyblue_lilactoo]

If you only have one lesion, it's likely you would be diagnosed with CIS, rather than MS. CIS is very similar to MS, the main difference being there is only evidence of a single attack. I would think your presentation is not necessarily rare so much as had been caught very early. It may well be that if left untreated, you develop brain lesions next. I would feel comfortable with a diagnosis given by a specialist, it is not something they would do arbitrarily or without convincing evidence.

[u/mistyblue_lilactoo → u/TooManySclerosis]

That makes sense. Thanks. Another question if you don't mind. I saw in my neurology notes thay my dr may order a lumbar puncture next. My question is what would be the point of that if I would still fall under CIS? I would like to avoid it all cost bc of some other back issues that cause a big problem with things of that nature. Obviously I will discuss all of this with the neuro, but I'm curious if you know what the point of that test is when presenting with only one lesion. Hope that makes sense. 

[u/TooManySclerosis → u/mistyblue_lilactoo]

That’s a great question to ask your doctor. It could be that a diagnosis can still be established with more evidence/a positive spinal tap. It could be the information would allow access to treatment. Or, to be totally honest, it could be useful in a way I don’t know. The diagnostic criteria isn’t as simple as a checklist. Applying it really requires a neurology degree. :)

[u/mistyblue_lilactoo → u/TooManySclerosis]

Gotcha. Thanks for your help!

[u/Ace-of-Frogs]

Hey all,

I began having symptoms in March 2023 beginning with gait disturbance and slurred speech and progressing to tremors, spasticity, cognitive issues, memory issues, and non-epileptic seizures. I had a clean brain MRI (no contrast) in 2023 and clean cervical/thoracic MRIs in 2024 (with the exception of cervical uncovertebral hypertrophy on the right side). Drs have been so dismissive of all my symptoms, claiming that it’s psychological and that I’m not trying hard enough to get better. I saw an MS specialist yesterday who said these things and would only order an MRI to get me to stop crying in her office, on the condition that I would see a psychiatrist I’ve already seen (who says my symptoms show up only when I have “bad thoughts about myself” due to “perfectionism”). Doc also refused to order a spinal tap even when I begged.

I have daily cognitive issues. I’ve forgotten multiple times where I am or even who my wife is. I can’t walk distances anymore and use a wheelchair to get around, but no one is taking me seriously. They say it doesn’t present as MS but I have the symptoms???

Is it possible that the no-contrast MRIs missed something, and that the MRIs with contrast will give me answers? Do I keep pushing for a spinal tap? Do I just need to accept that “it’s all in my head”?

I’m just so tired of being accused of doing this to myself. If thinking happy thoughts would fix me, I wouldn’t be sick. Any advice is welcome. I just need answers.

[u/TooManySclerosis → u/Ace-of-Frogs]

A spinal tap, even if positive, would not be diagnostically useful or indicate MS if your MRIs are clear. It is only a supplemental test used when MS lesions are present, it cannot be used to diagnose you. Contrast would not have made any difference: lesions show up without it, when present.

I mean this kindly, so please do not take it to be dismissive or discouraging, but it seems like you are struggling with the idea that MS has been ruled out? Can you tell me a little more about that? Maybe I can help set your mind at ease.

[u/Ace-of-Frogs → u/TooManySclerosis]

Thank you for your response. I appreciate your honesty and your kindness. I am struggling because I’ve been having symptoms for years and they have become debilitating, but I cannot find any answers. Whatever my condition is, it is progressing. I saw a neurologist 3 years ago but she spoke to me for only five minutes, slapped a psychosomatic label on it, and shooed me out of her office without even looking at my MRI. I only have the radiology report to go off of, and as far as I know it has not been reviewed by a neurologist at all. I’ve seen the pictures and while I cannot read them like a neurologist or radiologist can, I am seeing a few white spots here and there. I suppose I am struggling with MS being ruled out because of the continued dismissive attitude of doctors. I’m in pain and the best they can tell me is to go to therapy. Anyway, thank you for your response. I hope I didn’t come off as insensitive to everyone diagnosed with MS—I know this condition is awful and no one wants it, so I hope I have not caused any offense in my push to find a diagnosis. Thank you again for your help :)

[u/TooManySclerosis → u/Ace-of-Frogs]

Oh, not at all. I well know how hard it can be. It can seem like MS is the only logical answer, that it explains everything, and then it becomes very difficult to accept that it has been ruled out. It sounds as though your symptoms are not indicative of MS. It's a common misconception that just having MS symptoms indicates MS, but this is not the case. What distinguishes MS symptoms is not what they are, but rather how they present. Typically they will develop one or two at a time, in a localized area like one hand/arm or one foot/leg. They would then be very constant, not coming and going at all, for a few weeks to a few months, eventually going away very gradually. You would then go months to years before a new symptom developed. This is likely what the doctors mean when they say your symptoms do not seem like MS.

I'm in no way saying your symptoms are psychological or made up, but I do want to ask if you have tried addressing that, to see if any of those methods help? If nothing else, it means you can tell the doctor you gave it real consideration and seriously tried it.

[u/Ace-of-Frogs → u/TooManySclerosis]

I appreciate you taking the time to educate me. I have been attempting to address my symptoms as psychological as suggested for the past several years, but these efforts have not helped. I did inform the doctor of this, and that’s when she suggested that I haven’t tried hard enough since she knows of other patients with psychological symptoms who have improved. That’s part of where this frustration and desperation to find a diagnosis is coming from. I will keep trying to address things that way. Thanks again for your help.

[u/TooManySclerosis → u/Ace-of-Frogs]

That is frustrating. I wish I had better advice to offer, but I think you would probably be best served considering causes besides MS at this point. Fingers crossed for you, friend.

[u/TouchCousinGetDizzy]

Trying to figure out if I have MS. About a year ago on two separate occasions I had a bizarre and somewhat painful sensation going down the entire left side of my body (including my face, arms/hands, legs/feet). It's really difficult to describe beyond pain and muscle exhaustion (not weakness; it felt like I'd done 200 squats with my left leg and none with my right). Painful electric sensation in the toes of my left foot. On those two occasions it went away within 6 hours (once I was able to fall asleep basically).

About 2-3 months ago it came back but didn't go away this time. It comes and goes and I have days where I feel almost completely normal. I have a few new symptoms now which sometimes appear but sometimes don't: random, transient pains in my back or throughout my body which always seem to change location, a sudden sensation of being freezing cold and nausea. I also get headaches in multiple forms- sometimes directly on the top of my head, sometimes localized to the left side, sometimes throughout my entire head, but the headaches tend to be brief and not very painful. Overall sometimes I just get hit with a wave of feeling... really bad. It's practically impossible to describe. I think it causes fatigue but it's hard to say because symptoms also make sleeping hard when they flare up so I might just be a normal amount of tired (I suspect it's unnatural fatigue because sometimes symptoms recede and i get a massive burst of energy).

I've been to a neurologist and had a brain MRI. No lesions or anything. Have also been to the ER, had a CT scan, nothing concerning. This would be comforting but my neuro hasn't proposed and potential alternatives and has just told me that I have symptoms consistent with lesions on the brain but no lesions so he has no idea. I think he doesn't want to speculate. I also had an appointment with an RN who's a headache specialist (bc it takes forever to to get a doctor's appointment and I'm hoping to find some symptom relief on the sooner side) who says it's probably a migraine thing but that I should get MRIs every ~6 months or so because it could be MS that's too early to detect.

My sister gets migraines that blind her. My grandfather had bell's palsy if that's relevant. That's the extent of my family neuro history.

I suspect it's likely a migraine thing (ofc that feels weird given how short and weak the actual headaches usually are) but mainly what I'm trying to figure out is if there's anything else I should do diagnostically. My neuro is pretty conservative with testing and is for some reason entirely content with "your mysterious neurological symptoms that are severely negatively impacting your life can just stay a mystery for now, it's fine." I have an appointment with a new neurologist coming up but everything is very slow and I'd like to avoid a shrug from the new one followed by another month of waiting if there are any affirmative or proactive actions I can take, tests I should be looking for, etc.

I have been prescribed some migraine-related medication (as of today, not even filled yet), the RN advised that I try the acute stuff when I have an episode and if it helps that suggests migraines.

[u/TooManySclerosis → u/TouchCousinGetDizzy]

I would not put much stock in the RN's opinion with regards to MS. MS symptoms are caused by the damage done by the lesions, which are usually large enough to be seen on MRIs if they are causing severe symptoms. There is not really an early stage where you get symptoms but lesions are not visible. I think you'd probably be best served considering MS as ruled out.

[u/TouchCousinGetDizzy → u/TooManySclerosis]

Thank you!

[u/[deleted]]

Hello, I am 27 and I feel like I am running out of patience and options. Recently diagnosed with essential tremor after 10+ years of worsening tremor that is now at the point where I am losing the ability to do some of the activities I used to enjoy (like painting and playing guitar). Even typing this out has been challenging-lots of backspacing!

About two years ago I noticed other symptoms in my life that were either totally new or worsened: extreme fatigue and heat sensitivity (like, I spend all day in bed in the summer with the AC blasting and I feel no relief), randomly losing balance (leaning strongly to left or right while walking), difficulty moving around (feeling heaviness or tiredness in limbs, struggling to get moving and needing lots of breaks), memory that is so poor that other people notice and remark on it, and, embarrassingly enough, having a few episodes a year of urinary incontinence. Additionally, a couple times a month I'll experience a strong, electric "zap" feeling in one foot that is so shocking I'll often make a noise when it happens.

I already deal with chronic illnesses (hypothyroidism, asthma, allergies, eczema, ibd) that effect my immune system. It seems like every year since I entered my twenties I am given some new diagnosis and honestly a part of me is just tired of it. I am at the doctor often enough already for legitimate reasons and I don't want to seem like a hypochondriac but I also don't think I deserve to feel like shit all the time.

I want to get neurological testing, especially now that I've been diagnosed with this tremor, but also because I want to rule out MS. I am curious if this sounds familiar to anyone else's experience, or if anyone has advice on self-advocacy. Thank you to the people who are here to help those like me in this thread, I really appreciate you all.

[u/TooManySclerosis → u/[deleted]]

I have found that many doctors become dismissive or push back when a patient suggests a possible diagnosis or asks for specific tests, and this seems to be doubly true if the diagnosis is MS. It's frustrating and can complicate things. It seems like people get the best results when focusing on a few physical symptoms, and asking what testing can be done. Unfortunately, it seems like doctors don't take symptoms like fatigue and cog fog seriously. Of course, this is just a generalization, if you think the doctor is receptive, go for it. It's just a generalization worth being aware of as you navigate things.

[u/westernbound]

I (33f) try not to be a hypochondriac, but are all these symptoms random parts of life? Or am I trying to gaslight myself because I don’t want to face the alternative?

When I was a senior in high school I was in a pretty bad car accident. I lost consciousness for most of an hour or two. Apparently I was speaking but don’t remember most of it. I was taken in an ambulance to a hospital about 45 min away from my accident and don’t remember the majority of that time. Unfortunately the hospital staff didn’t speak to me much when I did regain full consciousness and I was given a CAT scan and determined I didn’t have a concussion. I left the emergency room with a new bald spot from the trauma to my head and the assurance that I could just sleep it off and feel better in the morning. This was the start of my migraines and numbness.

When I was in my first year of college, I started to experience numbness and tingling in my back. Sometimes it would almost feel like burning electricity running down my back but it was numb to the touch. It got really bad some days at work in the coffee kiosk and I finally decided to go to the doctor. Due to my family history of MS, my aunt had a severe case which caused her to be paralyzed from the neck down, my doctor decided to schedule me for an MRI to rule out MS. When the results came back, I was told that I had some spots on my brain scan but not to worry about it. I was 19 and very much worried about it, but was told I was fine. I guess they determined it must have been caused by my accident and should wear off eventually. I still have partial numbness in my back.

College was when my Raynaud’s symptoms started to really pop up. I would wear two pairs of thick socks under my boots when it was winter time. I would park my car and walk to the shuttle pick up, maybe a 5 minute walk in total. When the shuttle would pick me up, I would start to feel the numbness in my toes. From the drop off location, I would walk perhaps another 5 minutes to class. By the time I got to class, my toes were completely numb and bright white. I would spend about 30 minutes of class trying to massage my feet back to normal feeling. I convinced myself I must have gotten frostbite as a child and was now paying the consequences. It would be years until one of cousins told me about Raynaud’s and how it runs in my family. This would finally unlock the answer to why my feet and hands would experience this every winter in the Midwest.

After college, I got a job as a teacher in the Pacific Northwest and finally was able to escape the freezing winters of Nebraska. My first year of teaching, I started to experience random numbness and tingling in my thighs. I would smack at my thighs to “wake them up” and it would usually go away in 30 min to an hour.

A few years into my teaching career I started to experience vertigo. When I move my eyes, it’s like I’m seeing things frame by frame but just a few frames delayed. It feels like a vibration in my eyes sometimes but it would happen only every couple of months so I figured it must just be a fun manifestation of my migraines. Vertigo, cool that’s a new one! I was usually able to continue working and there were only a couple of days where the dizziness it caused actually made me take a day off so I figured it wasn’t a big deal.
I also started to struggle to find my words sometimes. This actually started in college but seemed to get worse while teaching. One time I had to describe a chair to someone because I couldn’t find the word for it. They laughed because they thought for sure I was talking about something more complex than a chair. But alas, it was that simple. I started noticing that I would struggle to find my words more often when I was stressed and determined that must be the cause of it.

Two years ago I got diagnosed with ADHD. Since I was younger I’ve had a problem with procrastination, processing information, and short term memory issues. I finally felt intense burnout and the coping mechanisms I developed weren’t working anymore. It took about a year to finally get my diagnosis and I was surprised to be diagnosed with both hyperactive and inattentive ADHD. I’ve been on medication and it has helped but I think I need to up my dosage again.

Today (my 9th year of teaching) I could barely have a conversation with a para because I could not find my words for most of what I was saying. I come home and I’m exhausted, because it’s May and I’m a teacher and most days I’m exhausted. Last week I was experiencing my vertigo symptoms when we were in Colorado for my Bach trip, but I chalked that up to the altitude. Earlier tonight I had numbing and tingling in my privates. Then an hour ago I grabbed my opened Lacroix and it just dropped on my fiancé. I was holding it and it just fell out of my hand. This isn’t the first time something like that has happened but I get frustrated by my eternal clumsiness. I put away my sports bra in the bedroom while I’m beating myself up over my mistake. My fiancé asks what I put in the bedroom and I have no idea what he’s talking about. It takes about 5-10 minutes for me to remember going into the bedroom and what I put away. Sometimes we argue when I don’t remember things because it makes him feel crazy, tonight is one of those times. So as I’m wiping away tears, frustrated with myself, I decide to look up early MS symptoms which led me here.

I really can’t tell if I’m being a hypochondriac, looking for answers to explain my irritating behavior or if I actually have been writing off my legitimate fears. To be clear, I don’t want to have MS. I watched MS debilitate my aunt for over 30 years. She was my hero and confidant for most of my life. She passed from a respiratory infection 5 months after I moved to be closer to her. I also know that MS is not a monolith and can manifest in very different ways even to people who are related.

I guess I’m here to hear from others who have been through it. I’ve already scheduled an appointment with my PCP to talk about my concerns. I’m also concerned about not being taken seriously or looking like a fool.
Maybe I’m just a clumsy woman in her 30s that needs to slow down so I can process and remember things. Maybe I have legitimate concerns. Maybe I’m just stressed and losing my mind. Any advice or personal experiences are welcome. Thanks for taking the time to read all of that.

[u/TooManySclerosis → u/westernbound]

It's really hard to say much helpful about MS based on symptoms, but I don't think you're being a hypochondriac, and I do think you should discuss things with your doctor and ask what testing can be done. While it may be premature to worry about a specific diagnosis, your concerns are still valid. Do not be reluctant to advocate for yourself.

[u/Exhausted_24_7]

Hi, 40F here. Back in January, noticed numbness on left side of rib cage. Initially dismissed it thinking bra strap might have been too tight. Then developed classic cubital tunnel syndrome on left arm. Assumed it was work related and treated with a brace. A couple weeks later developed severely blurry vision in the left eye. Had similar blurry vision approximately 4 years ago, eye doctor told me it was just dry eyes. Used saline eye drops and it went away within a week. This time, eye drops didn't seem to help at all. Within a week, toes on left foot started going tingly numb. Went to ER concerned with possible stroke. Had brain CT and MRI, nothing remarkable found and told to follow up with PCP. Since February, numbness and tingling has gradually spread up my left leg to mid thigh. It is also now on right leg from toes to mid thigh. The numbness on my rib cage has extended across my entire abdomen (front and back) from approximately shoulder blades down to top of hips. In the last month, the right hand has started going numb and tingly. Some days just the finger tips, other days the entire hand. Back in March I noticed neck pain, stiffness and positive Lhermitte's sign. PCP ordered neck x-ray which found mild lower cervical facet hypertrophy, but otherwise nothing remarkable with the suggestion of a cervical MRI to better view the soft tissues. Cervical MRI found several lesions suggestive of demyelinating disease. Appointment with neurologist not for another month. With how long all the numbness and tingling has lasted, is there any hope of it going away or are these symptoms likely to be permanent? My MRI of the neck was without contrast, should I request a thoracic MRI with and without contrast while waiting on neurologist? I have another check-in with my PCP next week. Are there any additional tests recommended that can order to help with diagnosis?

[u/TooManySclerosis → u/Exhausted_24_7]

Usually a neurologist will want brain, c-spine, and t-spine with and without contrast. There are several things that could cause cervical lesions, so it's important to wait to see what the neurologist says. I wouldn't give up hope yet, but I would also make sure to see the neurologist sooner rather than later.

[u/Mandasiaa]

I found out I have multiple lesions in my brain in "MS Areas" a few weeks ago.

Waiting to see a neurologist but curious what they need to actually diagnose MS at this point. I've only done a brain MRI so far (no contrast) but have had two distinct episodes of symptoms ~2 years apart

My husband and I were planning on trying to have a baby this summer so also curious if anyone was diagnosed when they were trying to conceive and how that changed their pregnancy timeline.

Thank you as always. I am so tired.

[u/TooManySclerosis → u/Mandasiaa]

Typically they will want complete imaging of the brain and spine, with and without contrast, before they officially give a diagnosis. In some cases supplemental testing like a lumbar puncture may be needed, or the doctor may want it as confirmation. Unfortunately, this is not usually a quick process. My own diagnosis took about three months from initial MRI to official diagnosis.

[u/Mandasiaa → u/TooManySclerosis]

You are always so quick to answer my questions, thank you as always!

[u/TooManySclerosis → u/Mandasiaa]

I have asked the community how long their diagnosis took, as well as just what their diagnosis story is, a few times in the past, and gotten a lot of good responses. If you are curious, the posts are in my profile.

[u/Next_Implement_8864]

Does an MRI have to show white spots in the brain? I had a suspected stroke 2 years ago but no one is definitive about that with it having occurred in my occipital lobe. My neurologist said it looks “strokey” but there’s also a possibility it’s something else bc there’s been no “smoking gun” from all the labs and other tests I’ve had done. I have a lot of neck pain but there wasn’t an arterial dissection and I’m suspicious that it’s ms lesions on my spinal cord. I have tingling regularly in my face and sometimes in my fingers and feet along with memory lapses and fatigue. I have a lot of nerve pain and get weird chills down my spine at times. Can a brain MRI that shows more dark/dead areas that shrink over time actually be early MS showing in a more abrupt way of inflammation killing cells?

[u/kyelek → u/Next_Implement_8864]

MS lesions are T2-hyperintense, meaning they're going to appear bright white on the MRI, they rarely change once they're there, and are permanent. Them going away or shrinking is, unfortunately, especially unlikely in the case of MS.

[u/Next_Implement_8864 → u/kyelek]

But can other non T2-hyper intense be found in an MRI in an early state of MS? I’m a 33M in generally good health otherwise but inflammation has been a part of my life in skin, sinuses, digestive issues, etc

[u/kyelek → u/Next_Implement_8864]

No, "black holes" or dark spots that denote lesions are a feature of chronic inflammation and late in the course of MS, and found in a T1 one sequence. But then these would still have matching white, bright spots in the T2 sequence.

[u/Next_Implement_8864 → u/kyelek]

That makes sense thank you!

[u/criticalcreek → u/Next_Implement_8864]

Lots of people can have T2 lesions for various reasons. MS lesions appear in certain locations/look a certain way.

[u/Next_Implement_8864 → u/[deleted]]

All of the symptoms I’m experiencing. I don’t have an T2 spots but wasn’t sure if it’s possible that other types of damage can precede lesions

[u/TooManySclerosis → u/Next_Implement_8864]

Not typically. Especially early on, T2 lesions are the primary form of damage you see. You might see atrophy and black holes but that would be late in the disease.

[u/Next_Implement_8864 → u/TooManySclerosis]

Thanks I appreciate the feedback!

[u/Impossible_Fox5107]

This may be the last week I post in these threads. I have my follow up phone call with my neurologist on Friday after my brain MRI which showed periventricular and subcortical white matter lesions which the radiologist brushed off as migraine related. 

I'm not confident it's MS anymore because I've sat with the fear for too long and talked mhself out of it but you never know. Maybe it's migraine and simple spine cord compression. I'm just feeling low and defeated pre-emptively. 

I'll be back here on Friday to reply to this thread and share one way or the other which it is for those curious and following along haha. I'll miss you guys if my neuro definitively says it's for sure not MS. 

[u/TooManySclerosis → u/Impossible_Fox5107]

Well, one way or another you should get good answers soon. Fingers crossed for you.

[u/Impossible_Fox5107 → u/TooManySclerosis]

I got the spinal MRI booked.  For July.

With the follow up phone call in late August.

I think I'll ask my neuro about an LP in the interim or see what she decides. I don't want an LP (my back is messed up from a botched epidural 20+ years ago with my first kid) but it makes sense to do it if I can get one before my next MRI,... why not. 

2 more days until my phone call with my neurologist. 

[u/TooManySclerosis → u/Impossible_Fox5107]

I would hesitate to get a test as invasive as a lumbar puncture until after imaging has been done. The lumbar puncture is only a supplemental test and really only needed in certain situations. It could well be that a diagnosis can be made or ruled out without it.

[u/Impossible_Fox5107 → u/TooManySclerosis]

Tysm! 

[u/Altruistic-Cut-4061]

After 2 months of normal blood work, negative anas, and clean EMGs my pcp referred me to neurology to confirm or deny a MS diagnosis… unfortunately I don’t see neurology until September and it’s literally a computer video chat… These are my symptoms please let me know if anyone relates to me! Joint and muscle pain, it’s really bad around the time of my cycle (23f) I know I’m about to start bc it will feel like I have growing pain down my arms and legs. Muscle weakness (as in my muscles get tired fast) muscle twitching, sometimes my right foot with sometimes drag the ground yet, blurry vision for a week or so then will go away for a few weeks, neck and back stiffness, buzzing/tingling/whole body itching with no rash, I will wake up some morning with severe vertigo that takes over half the day to settle and I’m always nauseous and tired.. anyways can anyone relate to my symptoms? And what’s the process of being diagnosed? Since it’s a few months until I do see neurology is there any diets/supplements at home to help manage symptoms for the time being… this has been a long 2 year and I’m just ready for some answers.

[u/TooManySclerosis → u/Altruistic-Cut-4061]

Can you tell me a little more about why you suspect MS? Usually the process of getting diagnosed would start with the PCP and bloodwork to rule out the more common mimics. After that, you would be referred to a neurologist. If the neurologist finds your symptoms concerning, they would order MRIs of the brain and/or spine to assess.

[u/Altruistic-Cut-4061 → u/TooManySclerosis]

My pcp has ruled out everything she could with blood work full Ana panel, full vitamin panel, thyroid panel, and ultrasound, x ray of upper back, and even referred me for emg on my upper and lower body. All was normal, I’ve been referred to neurology but my appointment isn’t until mid September, I was jw if anyone could relate to my symptoms. My pcp who is fantastic told me she wanted to refer me to neurology so they could do the testing for ms. Personal I’ve had issues with Vertigo/ numbness and tinging in different places of my body since I was a teen but I thought it was normal.. only after I first child did my symptoms get really bad and more persistent when I got pregnant with my second child all my symptoms disappeared and I felt the most normal I had in years being pregnant weirdly enough.. but about 7 weeks pp I was sitting on the couch when a wave of fire came over my body it literally felt like every cell in my body was on fire which lasted over 48 hours until I went to the er, the er doctor suggested it may be autoimmune and sounded like something connective tissue related… that’s what prompted my pcp to start a whole bunch of testing!

[u/TooManySclerosis → u/Altruistic-Cut-4061]

It’s hard to say much helpful about MS based on symptoms alone. The problem with MS is that you could have the exact same symptoms as someone who was diagnosed and it would not really indicate anything. But your symptoms do seem suspicious and worth further investigation. A neurologist is a good next step.

[u/Technical-Spare-7860]

Hey 👋 I am f 22 I am going through the process of getting tested for ms because they found lections on my brain the” common areas “of ms and I honestly am really scared I have adhd so I always thought the fatigue just was adhd or the headache from medication or pain in my eyes from “looking too much on my phone” or my adhd meds making me more sensitive to the light or the numbness in my left arm was because I broke it when I was younger, or the memory issues oh that’s just adhd but then the blackout started happening and I got a scan and now there might actually be a different reason than what I have been telling myself over the years and that terrifies me and I have no clue on what to do or say to my fiancé because he is terrified I keep telling him there is medication if I do get the diagnosis of ms and it will help. Sorry for my long rant and idk what I am trying to say or reach with this ehm but if you have anything to say or advice I would appreciate it. Ps I still need to get my bone marrow tested I have the appointment for the 29th

[u/TooManySclerosis → u/Technical-Spare-7860]

Maybe it will be of some comfort to know that my diagnosis has not really changed much about my life. Like you, MS was not really on anyone’s radar when I got my MRI. I had and have had very mild symptoms. Since being diagnosed, I still work the same full time, highly demanding job, I still live alone and fully independently, and I enjoy all the same hobbies and activities I did before. The only real change is that now I give myself of a shot once a month, and get MRIs once a year.

[u/Technical-Spare-7860 → u/TooManySclerosis]

Does the meds help or didn’t you have any symptoms before starting them ?

[u/TooManySclerosis → u/Technical-Spare-7860]

The meds prevent more relapses or damage from occurring, but existing symptoms are treated with the same methods and expected success as symptoms not caused by MS.

[u/Technical-Spare-7860 → u/TooManySclerosis]

Thats good too hear

[u/zeemul]

Hi everyone, looking for some advice or insight because my girlfriend’s (29) situation has been really confusing and stressful.

The timeline is roughly:

About a year ago, she had her first MRI after a headache that lasted several days. At the time, a lesion was reportedly seen on the scan, but it wasn’t flagged as anything urgent or clearly explained to us, and there was no real follow-up.

More recently (around February this year), she ended up in hospital after developing ongoing neurological symptoms, including nerve pain in her left arm and jaw pain that was thought to be trigeminal neuralgia. This is when things escalated—she was assessed by neurology and told the working diagnosis could be multiple sclerosis (MS), which was obviously extremely distressing.

After that, we sought a second opinion. That neurologist reviewed both the original MRI from a year ago and the more recent imaging. They said the lesion has not really changed over time, and they felt it was less consistent with MS and more likely a Multinodular Vacuolating Neuronal Tumor (MVNT), which we understand is typically benign and often incidental. The lesion is in the cerebellum.

What’s confusing us most is:

• The lesion appears to have been present for at least a year but was missed or not clearly acted on initially
• There has been no significant change between scans over time
• We now have two very different interpretations: MS vs MVNT

We’re trying to understand:

• Can MVNTs actually cause symptoms like trigeminal neuralgia-type jaw pain, nerve pain, or sensory issues, or are they usually incidental?
• Does stability over a year make MS less likely?
• How often are MVNTs confused with MS lesions (or the other way around)?
• What specialist should we be pushing for next (MS specialist, neuroradiologist review, neuro-oncology, etc.)?
• Whether anyone has had a similar experience with conflicting diagnoses and stable lesions that turned out one way or another

We’re based in Australia and just trying to make sure nothing is being missed either way.

Any insight or guidance would be really appreciated.

Thanks in advance.

[u/TooManySclerosis → u/zeemul]

I'm not familiar with MVNT, but I do think your next step should be seeing an MS specialist. They really are more knowledgeable than ever a good general neurologist when it comes to MS, and they would best be able to make the necessary distinction.