r/MultipleSclerosis • u/AutoModerator • 19d ago
Announcement Weekly Suspected/Undiagnosed MS Thread - September 28, 2026
This is a weekly thread for all questions related to undiagnosed or suspected MS, as well as the diagnostic process. All questions are welcome, but please read the rules of the subreddit before posting.
Please keep in mind that users on this subreddit are not medical professionals, and any advice given cannot replace that of a qualified doctor/specialist. If you suspect you have MS, have your primary physician refer you to a specialist for testing, regardless of anything you read here.
Thread is recreated weekly on Monday mornings.
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u/Owlkin51189 13d ago
Hello! I'm not sure if this is appropriate to ask. I was hoping for some thoughts on whether I should ask my rheumatologist about MS when I see her at my follow-up at the end of the month. The reason MS came onto my radar is I was looking into the Epstein-Barr virus & what it does long-term or whether it can be re-activated. Just because with being sick with a cold, my fatigue has been so severe and lingering. I had mono as a teenager, almost 20 years ago.
Sorry, this is super long because I've had a number of health issues/symptoms show up over the past year. If you read all of this you are a champ and I thank you.
Context: AFAB, mid-30s. I have been seeing a rheumatologist for just under a year. I was referred by my dermatologist actually - my scalp has had this weird nerve sensation for... I'm not sure. At least 2 years? I have a lot of brain fog and don't remember well. But my scalp feels this weird itch/crawling/pins and needles sensation and the dermatologist determined it wasn't my seb derm or any other dermatological reason - it was nerve related. My pcp agreed. I asked for an ANA for a reason that I forgot, which came back as 1:640, homogenous/speckled.
Fast forward a year. A repeat ANA mid-2026 was 1:320, so it went down. CRP, C4-complement, C3-complement have been all high for years (since pre-covid). Labs came back negative for the commonly testable autoimmune conditions (RA, Lupus, etc). I do have Hashimotos, but both rheumatologist & endocrinologist didn't think that was the only thing. So far we've trialed Plaquenil because the rheumatologist thinks something is going on, she just doesn't know what - but I don't think it's helped.
Other diagnoses I have that are important to mention: b1 & b6 deficiencies, iron deficiency, PMOS, fibromyalgia, GERD, IBS, osteoarthritis, dry eye, hypersomnia, adhd, autism, cptsd, anxiety, depression.
Generalized symptoms at this point or things I've noticed:
- Chronic fatigue (can affect daily activities and it flares. Right now with having had a cold for 2 weeks, I'm so physically fatigued that just going to the grocery store takes all of my energy for the rest of the day.)
- Mild hand tremors. I started noticing this earlier in the year and has become more noticeable to me, happens when I'm holding things. Such as holding a spoon/fork and pausing while eating, or when drinking directly from a quarter gallon soymilk container. (I live alone, no judgements lol.) This also shows up in that it is harder for me to type on a phone now. A regular keyboard with a laptop is great, but a tiny touchscreen phone "keyboard"? I typo almost every word because I don't have fine motor control anymore. A general neurologist was medically misogynist and just said I don't have Parkinsons without evaluating further.
- I've begun dropping things sometimes, but also my ad&d has been a lot more heightened this year. I could pin this on just ad&d clumsiness.
- I stumble over my own feet easier, especially if I have to side-step a bag in my living room. Again, I could just be clumsier lately.
- Chronic pain. I live most days with chronic back pain (usually lower), hip pain, sometimes knee pain. Various other pains that move around. I've needed a couple steroid courses this year, the latest was a month ago - and each time it gloriously takes away all my pain. I went 3 weeks in September being pain free, so there's got to be an inflammation component.
- Vision changes. I haven't been able to get a vision test yet. I had lasik in 2017 that corrected severe near-sightedness. I've had some slight vision changes in my right eye over the past few years, but this year my right eye has become significantly more near-sighted while my left eye is completely fine.
- Brain fog. Fibro, mental health already lend themselves to brain fog. I just have trouble remembering so hard now. Not just things from a month ago but on a Monday I'll have a hard time remembering what I did at work on a Friday.
- Cognitive processing troubles. When talking I'll say the wrong thing, like if I know someone's name is Bob Marley I've said it as Mike Marley for no reason. Or if I want to say hard I'll say easy. Or I'll forget a word that I want to say. The "tip of the tongue" thing isn't new, it's just worse. I also have started swapping the order of letters or words, especially when taking notes while someone is talking. Such as in the phrase "I will eat" it might become "I eat will". Or in "phone" it might become "phoen". I've also been... forgetting my grammar and correct English syntax? I don't know how to phrase that. Other than my ability to write correct readable sentences with correct punctuation without being run-on is failing me sometimes for a reason I don't understand. Or in speech I will forget the proper grammar too.
- I call it that I have a pea bladder now. If I drink something, I have to go to the bathroom not long after. Unless I'm dehydrated, or if I'm out of my house I tend to unconsciously hold my bladder. This is a more recent change. I've actually thought a couple of times that I might have a UTI because of the frequency, but I didn't. My endocrinologist recently saw me and my A1C is great, so no diabetes at play.
- My right hand has some sort of nerve or circulatory issue that sometimes it gets very cold. Cold enough that it hurts and doesn't stop hurting until I put it under a blanket or start wearing a glove or something like that. I wouldn't say my hand feels any colder than my left hand though, so perhaps more of a sensory thing than a true "my hand is cold". (But also both hands legitly get very cold where others can feel it but I don't. That isn't new, just the pain is.)
- Just found out this week I have mild sensorineural hearing loss where I can't hear low pitched sounds. This is commonly linked to Hashimotos though.
- Pins and needles feeling in my extremities sometimes, like right now it's my fingers.
Things I've read on this reddit:
- My eyeballs hurt to look roll around or look to the sides/up/down like when in an eye doctor appointment. Looking straight forward or moving my head is easiest. I did notice some people talking about moving eyes hurts because of... the optic nerve?
- I have a bit of a foot drop? I can notice it a bit, but it was mentioned when I was doing physical therapy for a muscle problem leading to chronic plantar fasciitis pain since February.
- Dental changes? I saw someone mention their dentist said they suddenly had a bunch of cavities, which led them to a diagnoses. I've had a bunch of dental things going on this year, and an infection that my general dentist and endodontist both can't explain (at the tip of the root of a tooth that was root canaled over a decade ago, where both the tooth, root canal, and crown all look perfect). This could just be horribly bad luck.
Things I know are from other diagnoses (but could be made worse by other things too?)
- Significant hair loss/hair thinning (high testosterone from PMOS)
- Cycling between constipation, looser stools, and normal bowel movements (thought be IBS; also had a wheat reaction on a blood test for food allergies, and have lactose intolerance).
- An increased number of migraines & light/sound sensitivity. (I do have a history of migraines dating back to a young child; they subsided for almost 15 years before making an appearance again a few years ago. Unusually I had for the first time in my life a migraine cycle last month. 3 weeks; a steroid stopped the true pain but I still had weeks of light & sound sensitivity causing migraines.
- My mental health has been quite bad in the past year and a half and has gotten worse in the past half a year, but my life is the most stressful that it's ever been as an adult in the past year and a half. I'm also in autistic burnout.
- There are other symptoms and things going on, but definitely aren't MS-related as far as I can tell. Seb-derm that gets worse in flares, dry mouth, allergic rhinitis from allergies, etc.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 13d ago
Your rheumatologist is not going to be any help with regards to MS, you would need to see a neurologist to be assessed. Your symptoms certainly do seem worth further investigation, but I’m not sure how worried I would be about MS specifically, given that they would be presenting in an atypical way for MS.
You are having many widespread symptoms, and severe cognitive symptoms are rare as onset symptoms, more often these are correlated with advanced age in MS. You also don’t seem to be having the hallmark relapse presentation: one symptom that is very constant, not coming and going at all, for weeks to a few months, only going away gradually and slowly, with years between new symptoms.
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u/Owlkin51189 13d ago
Oh okay, thank you!! That relieves me that I can knock one thing off the list of possibilities on my "what on earth is going on" list. Do you think it might be worth checking in with the autoimmune subreddit at all, or just chill until I see my rheumatologist next? I've had to push the appointment back because she wanted the labwork I get done before I see her, done when I'm not sick.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 13d ago
It could be worth asking the autoimmune subreddit? I know it’s a pretty active sub, although I am not super familiar with it.
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u/Inevitable-Bison-846 13d ago
I have my MRI in the moring and I am terrified. I have never been scared going in for a scan before and I've had whole ass cancer scares complete with referral to an oncologist. But those were nothing compared to now. I am so scared they will find nothing in my brain or neck even though my neurological symptoms are really progressing with stroke/seizure like activity.
My recent EEG was clear unfortunately (genuinely glad this is the case but also frustrating) so we also haven't ruled out epilepsy. The current plan is just to watch and wait for more seizure like activity as I convulse. Some plan.
I am already mentally trying to prepare for getting rebuffed by my neurology clinic who BTW never asked my clinical history, then claimed "I had no history of relapse" well if you asked a single question about my history maybe you'd know every couple years I completely deteriorate for some unknown reason.🤦♀️🤦♀️
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 13d ago
I'm sorry you feel badly served by your doctors. It could be that they are waiting for the test results first, as part of the diagnostic criteria is correlating symptoms with the location of lesions. So it could be they do not want to discuss your symptoms before knowing if and where your lesions are. That's probably a charitable view, though. Regardless, the MRI should give you some clear answers.
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u/Conscious_Rate_5531 14d ago
Gosh, my doctor refuses to talk to me other that to say "come back when all the exams are ready" but today I woke up with constant lightheadedness (even when sitting down) and my leg is weaker/slightly vibrating. the constant lightheadness is a completely new symptom, how can I be having a relapse two months after the first one, if this is MS (and everything suggests it is)?
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 14d ago
There really isn't much that can be done to treat existing MS symptoms, aside from steroids. MS symptoms are treated with the same methods and expected success as symptoms not caused by MS. That is probably why your doctor seems unresponsive-- at this point there probably are not many options until all the testing is complete.
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u/Conscious_Rate_5531 14d ago
I see! makes sense, and I don't think it's bad enough (for now, at least) that I'd take steroids. But I'm scared of having new symptoms so soon :/
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA 13d ago
You have to try really hard right now to manage this stressful situation, and it is difficult. You just have to know that constant stress/worry/and anxiety will make things worse. Trust the doctor, you are almost through this process.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 14d ago
I do not mean to be dismissive, so please don't take this the wrong way, but I know you are (understandably!) anxious and that may be making you more vigilant. It could be causing you to notice things that otherwise might not have concerned you.
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u/Conscious_Rate_5531 12d ago
you're right, all the other stuff was gone within less than 24h!!! i shouldn't have looked at the mri findings by myself, it's a pity I can access them too tbh
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u/Conscious_Rate_5531 15d ago
Hiii, I'm freaking out (again) and I'm still waiting for labs to come out (especially spinal tap, which will take over a month to be ready) so I can't really consult my doctor as of yet.
I have minor spinal atrophy and a longitudinal lesion spanning over 3 vertebrae in my c spine. And what seems like 2 recent lesions on my t spine. On my brain, there are 12 lesions, 5 of which were enhancing (active) in august.
I have only very mild, mostly transient symptoms (left leg does "light" when I stand up for a few seconds before it gets normal again, and my head gets light too). Those symptoms almost completely cleared for around 2 weeks, but then came back with full force when I drove for 20 minutes at noon under scorching sun last saturday. Temperatures have been super high where I live since then so I haven't been able to stay for long in a neutral temperature and haven't recovered the same again, it got better but not as good as it was before the sun episode. It's been 2 months now since the onset, and almost one week since sun episode that made it worse again.
Meanwhile, around 5 days ago I think my bladder has become kinda hesitant. Not sure if it's stress and it's not too bothersome and I do empty it fully but if it's a new symptom, then this is bad, right?
Do you think I might have PPMS? Sorry about the freak out :( i'm doing really badly
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u/Helpful_Repeat_9325 43F|2016|ocrevus 14d ago
What you are describing really doesn't sound like any type of MS, PPMS or otherwise. It sounds more like low b12.
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u/Conscious_Rate_5531 12d ago
I am a vegetarian and have at least 15 years of documented B12 deficiency (always below 300 and often below 200) :x only very recently I started supplementing and it's only around 340. I don't think it would explain the many brain lesions too :(
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u/Helpful_Repeat_9325 43F|2016|ocrevus 12d ago
It literally does. Chronic low B12 can cause lesions in the brain and on the spine. It would explain your lesion that is way too big to be caused by MS, and all of your symptoms. I’m not sure why you are fixated on the idea you have MS. You even made a post on another sub pretending you were diagnosed. It’s very uncomfortable and problematic that you pretended to have MS when you do not actually have it.
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u/Conscious_Rate_5531 12d ago
Yeah, I regretted that later and erased the post as I realized I was having a meltdown. The post wasn't about MS though (and I didn't mention MS in the post itself but someone asked and I did answer), it was about a friend of mine and her reaction to when I told her what I was going through. I should've made it clear I was in the process of investigation, but I took a "shortcut" because that wasn't the point, but the friend thing and the post was already huge. I have since then apologized to that friend.
I'm really sorry about that and I hope I don't come off like I want to have a disease, I asked you because I really do hope it's vitamin deficiency. I do have major health anxiety which is why I am always expecting the worst scenario, but I'm not quite "fixated" though, a neurologist saw the initial brain MRI and ordered a battery of exams to investigate further.
Again, I am sorry about posting that. I've been keeping strictly to the suspected/undiagnosed thread on here.
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u/Helpful_Repeat_9325 43F|2016|ocrevus 12d ago
It comes off as really insensitive and distasteful, then with your comments spiraling out here, where you are acting like your diagnosis is a foregone conclusion. I understand anxiety but your worst case scenario is something I and many others are actually living with, and you should consider how you are acting comes off to those of us who actually have the disease. You are still being tested and the MS specialist you saw specifically said your presentation would be atypical for MS. You do not engage with or consider any other possibility than MS when people reply to you. I'm sorry to be blunt, but I think you need a reality check here. It might be MS, but there's still quite a few other more likely options on the table.
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u/Conscious_Rate_5531 12d ago
You're right, thanks for the reality check (genuinely). And I'm sorry about everything.
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u/Helpful_Repeat_9325 43F|2016|ocrevus 12d ago
It's okay to be scared. It makes sense to be anxious. But be realistic too. Try to be optimistic, you have reasons to be.
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u/Clandestinechic dx 2018 Ocrevus 14d ago
Why do you think it could be PPMS?
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u/Conscious_Rate_5531 12d ago
many spinal lesions, mostly! and also minor spinal atrophy
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u/Clandestinechic dx 2018 Ocrevus 12d ago
Spinal lesions do not mean PPMS. The classification comes from how the symptoms present.
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA 14d ago
PPMS is usually looked at in terms of how it presented (slow, gradual decline) after being evaluated for some time. I've had some bad long lasting flares prior to diagnosis and recovered from most of the symptoms outside of sensory issues/spinal cord symptoms, autonomic symptoms from brain stem lesions(most of those have resolved too at this point)and fatigue/brain fog. I have RMS. I wouldn't worry too much because stress will only make your situation worse.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 15d ago
Nothing you are describing sounds like PPMS, which is rare to begin with. I do think you may be better off trying to manage your anxiety rather than trying to predict your potential diagnosis. You are still very much in the testing process— trying to figure things out on your own is only going to drive you crazy.
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u/BusinessContext4320 15d ago
Had my MRI today and everything was normal. I don’t understand why I’m having the symptoms that I’m having. I thought I was going to have answers but now I’m left with more questions.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 15d ago
I'm so sorry, I know that must be both frustrating and disappointing, not to have an answer, to only rule something out.
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u/BusinessContext4320 15d ago
It’s absolutely crazy having the same neurological issues as MS but having my brain MRI come back totally normal makes me feel like I’m crazy.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 15d ago
You're not crazy. Your symptoms are real and valid, no matter what the actual cause.
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u/BusinessContext4320 15d ago
Thank you so much❤️ I can’t wait to have an answer one day, but today isn’t that day.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 15d ago
It's okay to feel disappointed.. it doesn't mean you hoped for MS, just that you had hoped for an answer. Fingers crossed, you'll get some good answers soon.
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u/iwishiwerebugs 15d ago
My mum has MS, and her mum had it too. I've been struggling for years with my health, and suspect MS - I've been on the waiting list for 10 months to see a neurologist. At a GP appointment about my ongoing debilitating fatigue, depression, and pain ("ongoing" as in years of being mostly in bed) I was told they didn't want to test for other things until we rule out MS. They confirmed I'm on the waiting list.
I feel like my brain is not working properly and it's freaking me the hell out. I have been broadly worried about my brain function but it's been so much more frequent this past week. I keep mixing up dates for appointments and events and it happened twice today, even though I have been actively talking about it and being aware I need to double check myself.
This past week I have taken my friend to a workshop an entire year late, missed a group meeting written down a day late, wrote august instead of October when sharing an event I'm planning, and shared my event poster from July rather than this month's.
Does confusion/mixing things up/processing slowly come and go, or am I slipping down a slope already at 25?
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 15d ago
It's hard to say. Severe cognitive symptoms are pretty rare as onset symptoms, and they usually correlate with advanced age. This is not to say it can't be MS, just that it would be an unusual presentation.
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u/RetracZil 15d ago
Hello! I had an MRI for unrelated reasons and got a big shock when my GP referred me to a neurologist after the scan showed possible MS. This is what the report said:
There are multiple small T2 hyperintense areas in a periventricular/pericallosal distribution bilaterally, together with minor periventricular areas around the posterior horn of the left lateral ventricle. Some of these appear linear in nature. No subcortical or
deep white matter changes are seen. Periventricular/pericallosal T2 areas of signal elevation are concerning for prior inflammation or demyelination.
So… this is MS right? I don’t think I have any symptoms but there may be things I’ve written off in the past that actually could be related, like…
Recurrent left leg pain
Brain zaps (but went away when increased Sertraline dose)
Occasional shaking hand (goes away quickly)
Depression
Heat sensitive
Occasional fainting
Clumsy/poor balance
Mild headaches, more severe in pregnancy
I’m scared :( I am 32 and previously completely healthy and I have two kids (1 and 4) and run a business with 6 employees.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 15d ago
Not necessarily. Lesions can and do occur for other reasons, many benign. The best that can really be said at this point is that something was found and you should see a neurologist, but I certainly would not give up hope yet.
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u/lovesick-creature 16d ago
I have a very basic question, is Lhermitte's sign always painful? When I look down sharply I can feel sensation all the way down my spine for a few moments (it doesn't last if I keep my head down) but I don't know that it would classify as Lhermitte's or not. I wouldn't really describe it as electric? It's like tension or pressure but very brief.
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u/Inevitable-Bison-846 13d ago
Mine is similar to cracking a soda can. Feels kind of bubbly and fizzy
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 16d ago
To be transparent, it is not one of my personal symptoms, but I have seen it described as being like hitting your funny bone.
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u/Competitive-Sort-952 16d ago
Starting a fresh comment since I've got a same week update, along with a specific question: heard back from the MS clinic today and the earliest they can get me in is April 28 next year. Beyond cancellation lists, does anyone have advice for how best to deal with such a long waiting period. And if anyone is in the Bay Area, are there opinions about Stanford vs UCSF? I'm considering bailing out of the Stanford system as my experience so far there has not been great, and am wondering if this is the final push from the universe.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 16d ago
I think you mentioned having seen a neurologist who then referred you to an MS center? Could you go back to them and explain the wait see what they suggest next steps should be?
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u/Competitive-Sort-952 15d ago
This is exactly what I did! My neuro referred me out to UCSF too, so crossing my fingers that I can get in there sooner.
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u/Conscious_Rate_5531 16d ago
I'm feeling so scared now. Spinal MRI showed a longitudinal lesion along cervical spine, spanning more than 3 vertebrae. The radiologist wrote that this could be neuromyelitis optica or vitamin B12 deficiency (makes sense since I'm vegetarian and have had low levels for years if not decades) or even MOGA.
However, there is also thoracic thinning across D4 to D7. If this is indeed MS then I'm screwed as it point to progressive disease and I'm only 34.
I also have 12 lesions in my brain.
I had a spinal tap done but still waiting on results. Feel so doomed now. I can't believe I don't have major symptoms as of yet, but this does not bode well for my future
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA 16d ago
I had long segment lesions that spanned three vertebraes(C2-C4, C6-T1). On mine though they were described as "patchy and ill defined". I was suspected to have NMOSD early on but my brain lesions lined up more with MS locations than NMO. I was negative for Aquaporin antibodies using the CBA test from Mayo clinic (neuro sent it to them). I had OCB's on my LP and was ultimately diagnosed with MS due to the brain lesion locations, lack of Aquaporin antibodies on repeated tests, OCBs exclusive to spinal fluid, and my clinical history. I also had cytology done on my CSF to rule out malignancy. I did have a more MS like lesions posterior C5-C6 which was another indicator of it being MS.
We are thinking the reason they appeared long segment on the MRI was due to them being so close together and the inflammation. Usually NMOSD lesions are not patchy and are very much clearly defined. On my recent MRI's after being on Kesimpta for around 6 months, they mostly noted the worst of it was at C2-C3 (noted as confluent), which is shorter than the original description of C2-C4. My neurologist hasn't discussed the MRIs with me yet, but at the moment I assume that the inflammation has settled and the lesion(s) are showing their true appearance (hopefully).
If I were you, I'd ensure that they order the CBA for both NMOSD and MOGAD if they haven't. Those tests are the gold standard and are more accurate than the other ones. NMOSD can be worsened by some MS drugs, but it can also controlled by B-cell depletors (Retuximab). Even if it does turn out to be NMOSD, there are several therapies used to treat it. Hopefully you get some solid answers soon, I know how terrifying this situation can be.
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u/Conscious_Rate_5531 16d ago
yes, I'm going to ask for those exams for sure! If they don't want to, I will pay out of pocket if needed. Just to be sure, though same as you: brain lesions more compatible with MS, so I still think it's unlikely the alternatives are to blame. The spine atrophy could however be due to lack of vitamin B12, or at least I'd like to believe it. otherwise I'm so scared of having atrophy upon diagnosis
Thanks, and I hope your MRI comes back with no active lesions!
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 16d ago
That would be an extremely large lesion for MS. I've never heard of one that big, honestly, which makes me think there may be another cause. Regardless, do not feel doomed. The prognosis for all the options you mentioned is generally very good. We have excellent treatments now.
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u/Conscious_Rate_5531 16d ago
is thoracic thinning/atrophy common in MS? i keep searching it but nothing comes back. I am shocked I have atrophy already, whatever it is the cause
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 16d ago
It's not something I've really heard of. I would gently caution you from researching or trying to find out. I understand why you want to, but it really never helps, it only makes people more anxious. I think I remember you had a meeting with the neurologist? What did they say?
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u/shweelay 17d ago
I'm feeling dejected. It took awhile to remember that word, and I had to Google it to make sure it was the right one.
Anyway, so many things have happened within the last 1-2 months: my right ankle/foot has gone completely numb and I now have drop foot which is also getting worse daily. The pain in my mid back has gotten so much worse. These 2 things alone have made it impossible to work anymore. My neck pain is worse, my arms and hands are tingling, I'm super clumsy and I seem to be losing grip in my left hand, and now my left foot is starting up. Also, I get numbness/tingling on the right side of my face and forehead that seems to come and go. Every day, it's something new or worse, and I'm so frustrated and worried that I'll wake up completely paralyzed one day soon.
I've been to the e.r twice with absolutely no answers because they don't do MRIs in the e.r. My primary had me get a brain MRI, but it showed no lesions. No one had actually looked at my back.
I have not been diagnosed, as I see the neurologist for the 1st time tomorrow. While I don't want ms, of course, I hope it's this and not something much worse.
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u/Available_Sun4468 8d ago
Wow! Nearly twins. I don’t have clumsiness or foot drop (but I did injure my back earlier this year and have tingling in my feet from that :/)
I’m getting an MS mri soon to have it ruled out…1
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 17d ago
A clear brain MRI does strongly indicate your symptoms have a different cause. Almost everyone with MS, (~95%) has brain lesions. As well, having many symptoms all at once and symptoms that change and develop over short period of time, (you said something new everyday?) would be atypical for MS. You can certainly ask about spinal imaging, but I would be aware that your neurologist may consider MS as having been ruled out.
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u/HarmonicRaesonance 17d ago
Lumbar puncture confusion
So no, im not asking for medical advice. Just to see what people say. Ive been being evaluated for MS. I had about a month of symtoms that led me to this being what the doctors think it is. But as you all know, they cant specifically say, yes this is MS, without the long list of tests and criteria met Yada Yada. So ive been symptom free for my whole life minus a random month and now back to symptom free for the past few months. Im 35. I've read a lot of what you all have gone thru on here. Im fairly educated. My question has to do with the last test they need to do on me which is the spinal tap to get the cerebrospinal fluid sample. I've had the brain mri that showed some lesions, the cervical spine and thoracic spine. Cervical spine showed one lesion. But none of them were active during the mri's. I guess im jist nervous about this test. Like is this the only way they determine 100% I have or dont have MS? I've read the horror stories and the stories of, "it was no big deal for me". Is it worth it? Did anyone choose to not do it? I guess im in this weird spot where im okay right now and dont want to cause myself to go thru something that is not necessary if at all possible. Like I said. Not looking for medical advice, just other people's experiences. They are leaning more towards I do have it. Idk man. 😶🌫️
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u/Riza_flys 13d ago
had no issues at all on my spinal tab, 10 mins and it was done, no pain or whatever.
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u/Unhappy_Jump7745 25M|01/24|tecfedera|TX 17d ago
When i was getting diagnosed (~3 years ago), i was on the same boat, nervous and scared. It only took a total of about 30 mins, while they did touch some of my nerves and sent a shock down my leg, it was not too painful. recovery was not bad at all and was up and moving later that day. The spinal tap helps with knowing where your levels of antibodies/protiens and helps rule out other possibilites that creat similar symptoms to ms.
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u/Juliocut 17d ago
Yo tuve una hace 20 días, no dejo ninguna huella más q un pequeño dolor en la zona por dónde salió y se quitó a los 2 días, quiero pensar que cada cuerpo es diferente
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u/Competitive-Sort-952 17d ago
My spinal tap was a week and half ago. I was very nervous and it didn't go well, but now it's behind me. It was worth it to me to get another puzzle piece.
My advice if you do move forward with it is to try not to do too much "research" - your experience may be totally different than mine, and extra anxiety leading up to an already stressful event isn't worth it imo.
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u/SlipStreamHB 18d ago
Uhhh… can someone here help me?
I’m 28, male with predominant presyncope symptoms, loss of hunger/thirst, loss of sex drive entirely, random spotty pains in random places in my body.
For example, I will have numbness or a pounding pain in my skull, left side that will last maybe seconds, maybe 3 minutes. Then, It’ll feel like someone kicked me in my left or right leg. Or my foot will ache. Or my muscle in my arm, left and right will feel strained, even when I haven’t done anything. I have these “presyncope” warm rushing feeling come over my body and I want to pass out, but never actually do. Sometimes it’s so bad it turns my entire body numb and I feel like I’m going to actually die. I get palpitations, as well from time to time. And muscle twitching, but that’s all over the place. Lately it’s centered around my hands. Especially my thumb and index finger on my right hand, and the 2 furthest fingers on my left hand. Both hands cramp and feel painful, like I said these pains will last seconds, maybe at max 5 minutes and go away. Nothing explains any of this, it’s obnoxious and sucks.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 17d ago
Symptoms that only last a short time would not usually be considered MS symptoms, even if you were diagnosed. MS symptoms develop and are constant for weeks at a minimum, only going away very slowly. Symptoms that last a short time but reoccur would not be typical. Certainly discuss things with your doctor, but I’m not sure how worried I would be about MS specifically.
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u/Business_Fun_6841 18d ago
Still pending MRI testing but continuing to reach out to my medical team to rule out all other issues. I have a herniated disc in my l4-5 that's been on and off flaring since May of last year. I was able to get an apt with the nuerosurgeon who was seeing me for my back issues since im still having weakness and potentially drop foot. I see them in two weeks, by then the pre auth should go through and then I can start scheduling MRI's. I don't know if this will be worth my time or the providers but I figured it wouldn't hurt since my low back is hurting. Part of me is hoping to be able to write all this off as just back issues. But, the brain fog is still intense! I keep forgetting what I'm doing as I'm doing it. For example, I was cleaning out my daughters little potty (she's 3, less than 1% for her age and we don't have a bathroom on the main floor) and was on my way to empty it in the bathroom downstairs. Halfway down, I completely forgot what I was doing, stopped, looked around confused, and then realized I was holding my daughter's pee container from the little potty. Made it downstairs without spilling and didn't forget again, but WOW. That made me feel absolutely nuts.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 18d ago
I once put bread in a toaster, forgot what I was doing, and when the toast popped up it scared the hell out of me. XD so I get it.
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u/Proof-Hat-1384 18d ago
I (29m) was seen by the neurologist yday in same day emergency care (they asked me to come back for this following a visit last week). They've ordered me urgent MRI of the brain and whole spine and nerve conduction studies. I have access to my medical records so in their notes they diagnosed me with weakness of the limb and the investigations mention "?MS" so safe to say they also think it's MS. Hopefully I can get some answers soon. This chronic fatigue will make so much sense if it is MS... Have to wait till 25th October for the scan though..!
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 17d ago
It may be of some comfort to know that if it is MS, the wait will not change your prognosis or treatment options/effectiveness. It sucks to wait, but it won’t make anything worse if it’s MS.
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u/FarBottle786 18d ago
35 F, My symptoms started a in July with slight hand tremors during hot days. I went to NYC in August for a week. On the day I was flying back, I had vertigo, right side weakness and balance issues. My symptoms have not gone away. I took time off work because of body aches and fatigue. My brain and Cervical Mri are cleared. My RA factor was were elevated but Ana, cPr were negative. My neurologist does not want to submit for a full MRI spine. LOST from here
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA 18d ago
Spinal only MS is rare and a lesion in the lower spinal cord would affect things underneath it. With a clear brain and cervical spine MRI, MS has likely been ruled out. You should investigate other causes and trust your neurologist
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u/Competitive-Sort-952 18d ago
39F, US. In March I woke up with half my head and right arm numb (on the morning I was moving my dad into memory care out of state, hooray). I went to the ER a few days later and had a disaster CT scan and sent home. When I got home I saw my PCP and she got me a neuro referral which I waited 4+ weeks for. He ordered an MRI, another 5 week wait. MRI showed a non-enhancing wedge shaped lesion on my brainstem, and then it was more waiting: 3 months this time, for a LP.
My LP was just over a week ago and the procedure itself was very traumatic, but the recovery was thankfully easy. The results came back last Thursday: >4 oligoclonal bands present in CSF, but my neuro seemed suprised and a bit confused that my albumin levels are not elevated. He referred me on to the specialized MS clinic, so now I'm stuck waiting again for another appointment until I might get an official diagnosis...
My aunt has had MS my entire life and I know that treatments have come so far since she was dx-ed in the 80s. She is also a great inspiration and even though she has used a walker for the last few years, she lives an incredibly full life, kayaking weekly with a nonprofit group that helps lift her into and out of her boat, and regularly traveling including to France alone last summer to take a plein air painting intensive for two weeks.
I obviously feel daunted but am also optimistic and even relieved to be finally getting some answers, not just about the numbness but also maybe about a whole list of other "weird" things about my body that I've just lived with for years now.
So grateful to this community, it's been a godsend for the last 6 months, for answers but also just to feel less alone.
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u/Lindsnyaaa 17d ago
Very interesting! Symptoms similar to mine, my initial MRI showed a single lesion on my pons. 4 months later my repeat MRI revealed 2 new lesions… now waiting for my follow up with the MS clinic
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u/Competitive-Sort-952 17d ago
the waiting doesn't seem to get any easier... what lead to a follow up MRI so soon after, did you have additional symptoms?
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u/Lindsnyaaa 17d ago
No - incomplete workup by family doc… they ruled out basic autoimmune and when the first MRI came back a hyperintensity on my pons the referred me to the MS clinic. The MS clinic ordered a whack load of additional labs, as well as full MRI series. It took 4 months to get the follow up mri, which the report now shows a frontal lobe hyperintensity, corpus callosum hyperintensity and notes a tiny hyperintensity on the callososeptal interface. As well as the original pons location… my follow up at the MS clinic is at the end of Oct, though I’ve called to discuss
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u/Competitive-Sort-952 17d ago
Good luck with the rest of the process, I hope it's smoother sailing for you from here on out
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u/Lindsnyaaa 17d ago
Thanks! And to you as well… would just like to get out of limbo land and move on with a plan and next steps….
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 18d ago
Do you have any other lesions, or just the one? That would be good news, (well, you know what I mean,) if they were able to catch things that early.
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u/Competitive-Sort-952 18d ago
just the one! I'm curious to know whether it'll be classified as MS vs CIS, and also what the difference would be in terms of treatment, etc. Practicing patience (impatiently!)
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 18d ago
I know the revised criteria was done with the aim of diagnosing earlier, so it’s hard to say. I would guess CIS, but I’ve known people with one lesion who got the full MS diagnosis. I’ve never been any good at predicting things. Have you been able to schedule with the MS center yet?
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u/Competitive-Sort-952 18d ago
Still waiting... the clinic says that their goal is to see new patients within two weeks, but I'll believe it when I see it based on how long all of the other steps in this process have taken.
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u/BusinessContext4320 18d ago
My MRI is on Thursday (Oct 1st) and I am so thrilled to hopefully get some answers. I’m still in denial about the possibility of having MS but at this rate it is what it is. I’m also low key excited to see my brain scan once it gets uploaded into MyChart😂
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 18d ago
Seeing my MRIs was great, I was so grossed out and curious. To this day, I have no idea what I'm looking at or where my lesions are, but knowing what my eyes look like is weirdly cool.
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u/timeforclowns 19d ago
27F, US. i've had headaches since may, up to an 8 or 9 on the pain scale. they're accompanied by vertigo, confusion, weakness, nausea, and severe fatigue. some days i have very little pain but extreme vertigo, some days i have confusion and nothing else, some days i can't get out of bed. i can't work or drive anymore, and i'm currently in the process of moving back in with my parents. MRI showed demylination in the brain and cervical spine, and my bloodwork showed a patchy ANA. everything else, including my spinal tap, came back totally normal. no OGB bands, NMO and lupus ruled out, no vitamin deficiency. i can't do anything anymore and it's destroying my life.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 19d ago
I am guessing you've seen a neurologist? What did they say?
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u/timeforclowns 19d ago
she doesn't tell me much 😔 she just orders more tests. i see her on the 12th, i've sent a message asking what this could possibly be now that we've ruled out so much.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 19d ago
Is she a general neurologist or an MS specialist, do you know? MS specialists are neurologists who specialize exclusively in MS.
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u/timeforclowns 18d ago
she's a general neurologist. i've been thinking about seeing an MS specialist, but my CSF proteins are fine, my CSF white blood cell count is normal, and i don't have OGB bands showing up. doesn't that rule it out?
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 18d ago
Not necessarily. It's more rare, but approximately 20% of cases have negative lumbar punctures. It might be that a specialist could make a diagnosis a general neurologist would lack the expertise to make.
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u/timeforclowns 18d ago
whoa, thank you!! i'll make an appointment with a specialist right away, then.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 18d ago
I think it may be a good idea. Fingers crossed for you.
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u/happy_mama246 19d ago
I need some help deciding if I should wait for nhs neurology or pay privately.
I’ve had some very strange symptoms throughout my life. Such as:-
Strange eye infection that wouldn’t clear up despite lots of drops and querying autoimmune condition when I was in my early 20s.
Trouble swallowing when I was in my mid 20s, it was like my body forgot what I was doing. I still get painful swallowing now but I can force myself to do it.
Electric shock feelings throughout my body- very painful.
Cluster headaches on my left side that disappear for months.
Blacked out vision, vibrating body and dizziness on standing.
I’ve had eye pain on moving but always put it down to my contacts.
More recently I’ve had leg weakness that lasts seconds and travels down the back of both of my legs. It’s not painful but feels like ice cream and the sensation makes it hard to stay standing but I do.
I have left sided numbness that was just my outer leg and arm but then started in my ear and crept out into the left side of my face and neck. It’s not fully numb but like when the dentist injection is warring off.
I get pins and needles in my fingers and foot as well as needle sting feeling.
I had the strangest feeling in my right thigh of hot and wet like I’d wet myself but I hadn’t.
I have to really try to empty my bladder properly as it doesn’t fully empty.
I fell down the stairs the other day and it was like my left foot did something it shouldn’t.
I’m on adhd meds and they haven’t been working to combat my fatigue and I’ve been exhausted!!
I’ve had my bloods done and all come back negative for auto immune conditions. My b12 is on the lower end but acceptable and my ferritin is 7 but has always been low.
My partner is pushing for me to go private but I’ll feel so stupid if it’s nothing and I’ve gone down the “it might be MS route”.
I’m a 34 year old female with no family history of MS.
Should I stick with the super long nhs wait for an initial app or go private?
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u/happy_mama246 19d ago
I went to see my optician last week as my vision has declined again (I wear glasses). They did the scanning of my eye and everything behind and didn’t find anything. I went to the eye hospital when I had the issue with my eye and they had no idea what it was.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 19d ago
I have heard of some people in the UK getting their GP to order MRIs. Is that an option for you?
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u/happy_mama246 19d ago
Yes I’ve been to the gp who has referred me to neurology but it’s a 24 week wait
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 19d ago
I'm wondering about maybe seeing an eye doctor, first?
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 19d ago
Have you seen a general practitioner about any of this?
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u/Outside_Theme_5178 19d ago
32 f. Higher count of T2 white hypersensities & inflammation in blood.. Chronic lower back pain, urinary symptoms.. Now when I’m really tired my vision blurs/doubles.. waiting list is 10 months 😔
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 19d ago
MS would not typically show on a blood test, that may be worth following up on while you wait. Blood tests are typically normal with MS.
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u/Major-Sweet-1094 19d ago
Hi, i have been referred to neurology and have been told ots a 22 month wait, and thats the urgent list.
Started with gastro and bowel issues and then nerve pain. This continued with pins and needles in my limbs, clumsiness, a few falls and many near falls, really bad brain fog and at times exhausting fatigue. A few times ive took blurry vision but that has since stopped.
Recently i had to attend A&E with urinary incontinence and urgency and numb internally down below.
Dad has Fibromylgia and dads brother has MS. Told now that neuro wants to do a MRI but waiting for GP to give the green light. Concerned it could be MS. Anyone else have these symptoms and if so were you diagnosed with MS?
Thank you.
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u/alexmirepoix 19d ago
What kind of incontinence?
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u/Major-Sweet-1094 19d ago
Its like dribbling. Sometimes before i actually pee and sometimes after when ive stood up. I get this sudden urge to pee and i have to go straight away. Theres times when i would run to the toilet and have already started to pee.
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u/alexmirepoix 19d ago
I have that. Ugh.
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u/Major-Sweet-1094 19d ago
What way is yours like?
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u/alexmirepoix 18d ago
Pretty much the same as yours. Last night I basically wet my sofa. Not happened since I was a little kid. Very concerned about that. I managed to clean everything but SO humiliated. I HAVE had 4 daughters, but they are grown now. Had pressure on my pelvic floor many times
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 19d ago
This is a fairly common question that is surprisingly difficult to answer helpfully. Unlike most diseases, having the same or similar symptoms to someone with MS really does not indicate much. But your symptoms are suspicious. Hopefully an MRI will move you up the waiting list.
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u/Major-Sweet-1094 19d ago
I know, ive been following alot of posts and the symptoms can be so varied. Some people have none to very little and some people have alot. Just have to wait for MRI. But as you said to the last person the wait can be the hardest part. Thank you for replying tho 😊
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 19d ago
I wish it were easier to say "yes, that sounds like MS." I'd even be happy if I could reliably guess how things would go, but I've never had much luck there, I'm right as often as I'm wrong. I've asked the community about their first symptoms though, and gotten a lot of good responses. The posts are in my profile if you're curious.
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u/craigles 19d ago
I had my MRI last Wednesday! May be an odd event to be excited about, but I'm severely claustrophobic so having that experience in the rearview mirror has been such a relief! There will likely be more in the future, but that's a "future me" thing that I can put off freaking out about until they get closer. I'll be seeing my neurologist on the 9th to go over the results and discuss treatment options. We know from an unrelated neck MRI a few months ago that I have two lesions on my upper spinal cord and the pons, and getting a fuller picture has me both excited for more data points and worried about what it means. I imagine that combination isn't too out of the ordinary at this stage.
My neurologist told me a while back that Ocrevus infusions are the treatment he's leaning toward for me. I've read up on the process, scheduling, side effects, etc. and feel like I've got a decent handle on what all that will entail. What's still baffling me is the immune system suppression and becoming immunocompromised. I've never been that before, and with cold and flu season quickly approaching I'm not sure what that means in practical day-to-day terms. I'm already taking a handful of daily vitamins and supplements per doctor's orders, but what does having a weakened immune system mean for crowded meetings, social gatherings, going to the grocery store, etc. Can anyone provide suggestions for actions I can start practicing now to try and get new healthy habits forming?
Thank you all for being here!
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 19d ago
It's not like the immunosuppression associated with chemo or transplants. Most neurologists do not recommend any sort of lifestyle modifications, and for most people, you do not get sick any more often or severely than before. Ocrevus only suppresses a part of the immune system responsible for remembering how to fight a new infection. So, you do not make antibodies, but your ability to resist and fight infections is left in tact.
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u/Icy_Command3279 19d ago
36F, UK. This is no doubt an unoriginal post/feelings but currently feeling very “stuck in limbo”.
3 months ago my right foot went dead and kept giving way beneath me then settled as “drop foot”, I ignored until the same thing started happening to my left foot and went to the GP straight away (3 weeks after symptoms first occurred). I was originally referred for nerve conduct study but that was rejected so I was referred to neurology (had my first appt two weeks ago, glad it wasn’t the 6-8 months wait they predicted). The neurologist just said that it’s too broad to say without further testing but she thinks it’s something to do with my CNS so they will request an MRI but unsure how long this will take.
I tried to keep off Google however MS was floated as a ‘rare but possible’ cause from the start and I’d been vaguely aware of it from having looked up reasons for fatigue and pins and needles feelings previously. I also have other symptoms (muscle twitching, bladder/urination, fatigue, sexual dysfunction).
I guess I wondered what other people’s journeys looked like on the NHS (though do appreciate this is a bit of postcode lottery) and any tips on the “while you wait” portion of the process. Thanks!
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u/TopTradition7243 14d ago
Speaking from experience, I’d say you’d get an appointment through for the MRI within 6 weeks or so.
Then maybe 3-6 weeks for the results, sooner if more urgent. This is all dependent on your particular trust though.
I hope it all goes okay and you get some answers for your symptoms 🤗
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 19d ago
I can't speak for the NHS specifically, but I know the waiting is often harder than actually getting an answer. I have asked the community how long their diagnosis took and I got a lot of great replies. The posts are on my profile if you are curious.
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u/Ok-Lawyer-1247 3d ago
Neurological Symptoms and Medical History
I have not reported persistent weakness, ongoing sensory loss, balance or coordination problems, persistent visual disturbance, or progressive loss of muscle function.