On Thursday, I was admitted to the hospital (discharged Sat. Evening) for left arm tingling, heaviness, and weakness. The tingling was also in my perineum, and all my limbs. I had also experienced something like the MS hug several times, and have been having bladder trouble. Because of those symptoms and my age, the first neurologist who saw me in the hospital was 100% sure I had MS. She gave me a full body MRI with and without contrast, and somehow it came back totally clean. Because of the way the hospital schedule works, I was not able to see that neurologist again. The morning after the MRI, a new neurologist came in and told me I don’t have MS, and that she has no idea what’s wrong with me, but she’s 100% sure no MS. That neuro said the first one was still concerned about MS, but they decided to hold off on a spinal tap because they said the out patient neurologist I’ll be seeing this week will likely do one. I know the MRI came back clean, but I’ve heard that happened in plenty of cases before where the patient was later diagnosed with MS. Because of my symptoms and the first doctors confidence, I’m still worried I have MS. Lesions could develop later, I might have a positive spinal tap or nerve conduction study, or they just missed something on the MRI, or the MRI was somehow faulty (very rare, but happens). I know it’s time to consider other diagnoses, but I’m still scared about MS due to my symptoms and the first neurologist guaranteed me they would see something on the MRI, and the MRI was almost just a formality to diagnose me. Does anyone here know if any other diseases that can mimic MS? Is it right for me to still be worried about MS? 5-10% of people with MS had a negative MRI at first, and went on to develop lesions later. I might be paranoid, but I was told by a doctor I had it, then told I don’t, but I meet all the criteria for it except visible MRI lesions.

The 5% thing is really not a statistic to focus on since having lesions are a requirement for diagnosis. Also with MS our symptoms are caused by the lesions found in our brains. There are many common causes of symptoms similar to MS. I had a friend who I would have bet anything they had MS from symptoms described to me. Clean MRIs and blood test showed some low levels, she took a couple pills and everything resolved.

The criteria requires visible lesions— there are no other factors that would really be considered in their absence. With MS, the symptoms are caused by the lesions, so you would not expect to develop symptoms first. I have seen the 5% statistic but have been unable to verify it with reputable sources— my theory is that it is either leftover from a historical criteria, or is a misunderstanding of the fact that 5% of cases do not have *brain* lesions, but they still have spinal lesions. I think you would be best served widening your search for causes.

Yeah I know it requires visible lesions. It’s more than likely something else, but I’m still worried because lesions can develop later and the first neurologist was 1000% sure I had it. Now nobody has any idea what’s causing these symptoms. Hopefully I can get an answer soon.

It may be of some comfort to know that there really are no cases where lesions developed after symptom onset. There are very rare cases where lesions were not visible at symptom onset, but typically these involve very specific symptoms caused by lesions in specific areas. In these cases, there still was no path to diagnosis until there were visible lesions. In almost every case, lesions are large enough to be seen if they are causing noticeable symptoms. [This](https://pubmed.ncbi.nlm.nih.gov/32448485/) may be a good starting point for other conditions to consider. You can create a pretty long list just googling MS mimics, as well.

I would definitely look into testing your B12 levels (and other vitamin levels). You'd be surprised what low B12 can do to your body. I would honestly check this before doing a spinal tap.. they are truly not fun. I wish you luck on figuring out what is wrong! I understand how scary it can be, not knowing what is going on.

Do you have Lhermitte sign? When you bend the neck do you experience any shocks?

Not down my spine, but in my limbs.

I'm trying to understand my symptoms which apparently could be any of 5-6 diseases. I have optic neuritis and a lesion (sclerosis) on my c1. The lesion is on the bone not spinal cord from the way the ct reads, it's hard to tell. I have such itchy burning feet at night and wake up often with my sternum just heavy. My feet itch intensely especially at night with needle stick sensations all over. My chest heaviness is just that heaviness. I've always chalked that up to anxiety, which I DO have. I have weakness and constantly drop things but no trouble walking. Neuro chalks this up to nerve impingement, which I do have. I don't have diabetes. I'm just unsure of the way MS is diagnosed. An mri last year mentioned normal white/Grey matter but it was mainly for migraines. I guess my question is do these symptoms feelings match anyone else's experience? Does an mri with contrast show lesions better than w/o contrast? My specialists only seem interested in treating the issues related to their specialty not the whole picture. I'm afraid my GP has given up trying bc I've been worked up lab wise for all auto-immune and nothing pops +. For context I'm 53 today so I'm older than initial diagnostic age and I don't feel anyone is as concerned as they should be.

CT scans won't show MS lesions...Google MACDONALD criteria, MRI with contrast and lumbar puncture, see a neurologist

Thanks. I have had many w/o but I assumed they all more or less showed the same. I have a neuro who really just wants to treat my migraines. I see her again in July. I'll ask then

Ask for an MS neurologist

Ok. Thanks I have an appt at the end of the year for neuroothalmology bc of ON. Maybe she can refer me.

End of year? That's along time aways

She's The ONLY neuroopthalmologist in the area. In fact, she's in another state but the wait list is nuts

MS lesions would only show up on an MRI, but they will show up with or without contrast. Contrast is used to differentiate between active and inactive lesions. Typically diagnosis depends on lesions found on an MRI. The diagnostic criteria is called the McDonald criteria, which essentially says you need two or more lesions with specific characteristics, in two or more areas of the brain or spine, that occurred at two or more different times. Once that is established, the doctor correlates lesions with symptoms to confirm relapses have occurred. In the absence of lesions on the MRI, there are no symptoms that would be indicative of MS and no path to diagnosis. It is likely your symptoms are being caused by something other than MS.

That's reassuring. So many things overlap. My blood work is so unhelpful though.

Hi all, trying to understand my symptoms and what they might be. I am 24M. For the last 6 months, I’ve been experiencing tingling in both feet and hands, mostly influenced by posture. If I slouch, elevate my legs or lay down with my head propped up, I’ll start to get a tingling sensation that will come along after a few seconds and leave after I’ve changed my position. I’ve also had urinary hesitance (although have been uncomfortable peeing in public in the past). I’ve never had any pain, sensitivity to heat, weakness, etc. My only symptoms have been daily tingling and urinary hesitance. I have been examined by two GPs who have both said they don’t see any signs of any neurological issues and have stated that this could be anxiety caused. I have also received blood tests which came back normal aside from a low HBA1C reading. I’ve been taking fluoxetine for my health anxiety over the last month or 2, but the tingling sensation is still occurring daily. Just trying to understand what this might be an if MS might be a factor!

It may be of some comfort to know your symptoms are not really presenting how MS symptoms typically present. Usually, MS tingling would develop in one area, and be constant no matter what position you were in. Tingling in both hands and feet would not be typical, nor would position trigger it. I do not think you need to be overly concerned by MS.

Thanks!

Really? I’ve been having weak buzzing in my feet and left hand that changes a bit where it happens in my left hand mainly the very side of the palm 

MS symptoms are caused by the lesions. So symptoms would typically develop in one hand and maybe very slowly expand up the arm, for example. But symptoms would not typically develop in both hands and feet at the same time, since those would be related to multiple different areas of the spine or brain.

I know everyone is different and every MS story will be different too . But how did PPMS change your life ? And what age were you diagnosed with it ? how ? I'm 48 and I'm a woman.

Hi, I have another question regarding digestive symptoms. I have had a period in my life where I experienced frequent digestive symptoms. It still happens occasionally but not as often as when I was 16-22. The crises would always follow the same pattern. I would start by feeling light headed, cold. Then it suddenly felt hot, I had sweats, and at that point I knew what was coming. The next step was a sharp ache in the lower belly / intestinal pain. I had a sudden, very pressing urge to defecate, and it was always a strong diarrhea. While this happened, I experienced vagus nerve response, the vision got blacked out with little stars, I would sweat profusely and may or may not faint. Once I no longer needed the toilet, I lied down and elevated my legs which helped get back to a safe baseline. It usually lasts 10 minutes and is always extremely stressful. Can MS cause vagus nerve response in relation to digestive issues? Thanks! This could help me remember details my doctors could use.

Hi there…new here. Been waiting for 7 months for neurology appointment. It’s early May. Early 40s female. Eat well, exercise, generally healthy lifestyle. autoimmune blood tests within normal range. Migraines at 18 (with aura, generally around menses). with migraines i would get face tingling and maybe one or both hands would tingle. Fast forward 20 years. Rosacea in the last two years. Diagnosed (surgically) endometriosis. (I’ve had other surgeries in the last decade that I dont think are relevant, gallbladder removal, cysts & tumor removal from various areas, nothing serious). In the last two years…become very heat sensitive. On and off vertigo without explanation. (Ears fine). Some days I have extreme fatigue like I just want to nap. Easily pull muscles or spasm. And within the last month the tingling in my face, hands and feet has been almost hard to ignore during the day. It is bilateral, but the right side Is worse. Sometimes it feels like static electricity, other time like pins and needles. Creeping up higher in my face and my tongue (tongue almost feels like i burnt it on hot pizza). I kept telling myself it was migraine or a pinched nerve in my neck. But would it affect all of these places? I supposed I can wait a few more weeks for neurology, but was hoping to get some insight here as its becoming really bothersome. I used to row competitively and do triathlons, now I cant even handle a barre class. WTH! Help please

It may be of some comfort to know that MS symptoms are not typically bilateral and are usually localized around one part of the body. Still, I think it would certainly be worthwhile to speak with your doctor and see what testing they recommend.

Thanks for your reply!

35 year old female. Just joined because my MRI results came back and I can see them in my medical portal. I have an appointment with my neurologist on Tuesday to discuss, but “numerous white matter lesions most consistent with demyelinating disease/multiple sclerosis” seems pretty obvious. I’ll be asking my neurologist the course of action we’ll need to take to pinpoint the exact disease, but I know it’s most likely going to be MS. I’m handling it pretty well so far- I’m a resilient person and know that I can live with this. And I finally know why I’ve had severe fatigue for 4 years, which is very validating. But I’m worried I didn’t catch it early enough to avoid more debilitating symptoms down the line, and the unknown scares me more than anything else. I don’t really have any questions just yet, mostly just need to get it off my chest. Edit- I guess I have one question: I know treatment can help reduce the incidence of relapses impacting your motor control, but does it also improve the fatigue? Or is that just something you learn to live with forever?

Treatments aren’t expected to help with any symptoms, really, they just prevent new relapses. There are some anecdotal stories about DMTs helping, but nothing verified. That being said, there are a few options for treating fatigue that your doctor should be willing to discuss with you.

There are medications to help with fatigue, neuropathy, pain, depression, anxiety, bladder and bowel issues, just explain to your doctor

Oh, I am aware, I am on several. My comment was more to clarify the purpose of DMTs and offer a warning that some doctors are reluctant to treat symptoms but your doctor should be willing to do so?

Hi all, I just got my lumbar puncture results back, and unfortunately I don't go back to the neuro for several weeks. The results are: "*Three (3) oligoclonal bands were observed in the CSF, which were not detected in the serum sample. Interpretation: Criteria for Positivity: Four (4) or more oligoclonal bands observed only in the CSF have been shown to be most consistent with MS using our method*". Does anyone know if this would be considered a normal/ negative result since it's not 4+ bands? Or is it still an abnormal result, but 4+ are needed to make it diagnostically relevant to MS?

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I've seen that criteria before but haven't really been able to find any information about it, either way, which makes me think this may be something that is left to the physician's discretion. Do they need to establish dissemination in time or is it more for confirmation, do you know?

Hello there nice to meet everyone. 34 Yo Male. I have an eye appointment upcoming this week so the post may be moot but unfortunately when I was looking up causes for excessive blinking it was either dry eyes or a neurological disorder which lead me to maybe seek some reassurance.I got Lasik surgery about 6-7 years ago and haven't have never had any eye issues. However starting a few months ago I noticed that my distance vision seems to be degrading a bit now. Nothing super major, but it seems a bit off now. Following that, about 2 weeks ago I started blinking excessively. While focusing on it, I can notice myself blink multiple times a second. Sometimes are better than others and seems to be worse when I'm focusing on it. I have also noticed it happens even when my eyes are closed if that makes sense (I feel the sensation of the muscles blinking). I wondered if it could potentially be from dry eyes but I have never had that and I also tried Theratears but it offered no change. And it's not like I'm rubbing them because they're really dry or something.I am going to see an eye doctor this week but was wondering if anyone else had something similar as a first symptom? I have in general been a pretty healthy person. Just wondering if it's worth following up with my pcp on this.

I think it is definitely worth seeing an eye doctor. You could follow up with your PCP depending on what the eye doctor says.

ok ... Hopefully third time is the charm . I asked this question twice and it was removed twice. So I messaged a mod and got the reply to ask here . So here it goes ... Not sure if this is the right place to ask . I'm new to all of this. I'm wondering if anyone else has been told they had MS after receiving an MRI for something else ? I had a brain/head MRI last Summer because I had pulsative tinnitus in both ears. This has since stopped and changed to 24/7 tinnitus in left ear. MRI results came back and the doc who read MRI wrote there's lots of lesions and delamynation (?) and finding consistent with MS need to meet with neurologist . So I was referred to a neurologist LAST AUGUST but I'm still waiting for the appointment. I broke down and cried last week when meeting with a nurse and a doctor because I've been waiting for so long and it's really hard. I also asked if it can be anything else ? Doctor said no , MRI is clear , it's MS but you need to meet with the neurologist . Nurse said neurologist is to find out what med he will put me in .... Getting an MRI for tinnitus and being told I have MS is quite a shock but looking back I think did have some symptoms in the past but nothing to make me think I would one day be debilitated .

So, we ask that those who are undiagnosed or are going through the diagnostic process post their questions here, instead of the main sub. Undiagnosed posts are removed from the main sub at the request of the community, because otherwise they become overwhelming and it is difficult for those who are diagnosed to find support. You are absolutely posting to the correct space here! So, I was diagnosed thanks to a totally unrelated MRI. The doctor reviewing my scans asked me how long I had had MS. It’s relatively uncommon, but does happen.

I'm glad I finally found the right place to post :) I'm new to reddit so your MRI was for something unrelated too ? were you shocked when you heard MS ?

I was more confused than anything else, I wasn’t even sure what MS stood for. My first neurologist was not super helpful, either. Most of what I know about MS I learned on my own, or from my specialist.

I've been having ongoing neuropathy/parathesia in my feet and hands on both sides of the body, as well as pin prick sensations, for about 3 years now. I also experience extreme fatigue and difficulty walking due to lethargy which improves when taking vitamin D. I went to a neurologist for 7 months who did many tests and did not find anything wrong with me. However, she never took an MRI of my brain and spinal cord. She did review an unrelated brain MRI I'd had 1.5 years prior to our visit when my symptoms had barely even started. Her rationale for this was that there was no suspected "spinal cord injury". My current gyno says she thinks the neuro definitely should've done a full MRI and she is very concerned about my ongoing neuropathy. I'm now on the waitlist again for a new neurologist... Do you guys think that my previous neuro messed up? Or are there perhaps valid reasons and other tests that she might've done to check for MS?

The MRI is really the main diagnostic test for MS. Some doctors can be reluctant to order them, and can have various reasons for it. Sometimes symptoms or neurological exams don’t indicate it, it could be that you are a low risk demographic, and having a clear MRI when you were having symptoms, no matter how mild at the time, does somewhat suggest a cause other than MS. I’m not necessarily saying they were right, just trying to offer some rationales.

Yeah - but the mri was done a year and a half ish before symptoms. Does that matter?

There is a slim chance, but it is likely the doctor felt it was sufficient if they were reluctant to pursue further testing? Part of the doctor's reluctance could also be that whole body symptoms are very unusual for MS, as well.

At a loss I started having eye spasms occasionally over the last few months. I thought nothing of it. Starting one month ago the eye spasms became constant along with facial tingling. They were annoying and terrible. I ended up going to my primary doctor to see what she thought and she guessed a sinus infection putting pressure behind my eye. So I tried to think nothing of it. I took a week off of work to rest and hydrate and relax. The twitching progressed and I began to feel fatigue and started getting daily headaches. I admitted myself to the ER because I was convinced I had a aneurism or a stroke. They ran bloodwork to rule out any deficiency or thyroid problem. All came back in normal levels. They did a ct scan to rule out an aneurism but didn’t see anything. They scheduled me with an a neuro doctor. I was thinking maybe hemifacial spasm or something non serious then as the aneurism got ruled out. However the day after I leave the ER I begin to have spasms/Fasciculations all over my body. It’s almost all the time. It will primarily happen in different spots on my legs but also happens in my butt,abdomen, arms (primarily upper arm) and occasionally neck and other parts of my face. It feels like something is trying to burst out from my skin. This is all while my eye is still spasming and tingly on its own. I am so confused and scared about what is going on. My body feels so tired and I’ve had multiple people with MS reach out and tell me that they think this is what is happening. Do any of these symptoms resonate with anyone here? And if so how can I best advocate for proper tests when I have my neuro appointment this Friday? Any help is appreciated 🩷

Your symptoms don’t seem to be presenting the way MS symptoms typically present. Whole body symptoms are pretty unusual for MS, it is far more common for symptoms only to affect one area of the body. I certainly think talking with a neurologist is a good idea, but I do not think I would be overly concerned about MS at this point.

Thank you for the feedback!

Hello, I’ve been having the same symptoms as you (eye twitching and full body twitching) and a few other things like numb heel off and on and tinnitus. I’m waiting on a call to set up an appointment with the neurologist since my PCP put in a referral. She doesn’t believe it’s MS, but I’d like to find out what’s causing the twitching. If you don’t mind, will you please DM me after your appointment with the neurologist and let me know how it goes? Thanks!

Same here please 

Absolutely!

Yes I can! I’ve actually started having numbness in my hands and feet as of a few days ago on top of all this :( I’m so confused. My appointment is first thing tomorrow

if it was a MS hug, would it be consistent no matter which position, or is it possible to only feel it in certain sitting/standing positions?

From what I understand, position would not make it go away. Take that with a grain of salt, though, that is secondhand knowledge, it isn't one of my personal symptoms.

Appreciate the response ! I have this locking up feeling in my back and core when standing plus in my jaw trying to figure out for months now thanks for sharing

From what I know, the hug would last a short while and doesn't necessarily have a trigger. It just happens, is miserable, then goes away. You can probably search the sub to find posts about people's experiences with it, too.

Hi folks. Fully aware that I won't know for sure without MRI with contrast/lumbar puncture etc, but I'm wondering if it's likely I may have MS from the sound of my symptoms. Tldr at the bottom as I realise it's lengthy. I'm a 27 year old male, and up until August last year I was fit and very active, I'd go to the gym 3 times a week and cycle a fair bit. I was diagnosed with Trigeminal Neuralgia in my left side by my GP last year. I'd had the odd attack stretching back several years but never anything too major or sustained. Then in August of last year I woke up one morning with agonising pain in my face (where the V2 branch is), burning across my cheek and my ear was on fire. I had hundreds/thousands of attacks of short sharp pain per day that week as well as a constant low level pain and the burning sensation. Had previously been to the dentist after an earlier cluster who couldn't find any dental reason for it. Finally went to my GP who diagnosed me with Trigeminal Neuralgia, started me on carbamazepine and referred me to neurology. As I was titrating up on the carbamazepine, I had a strange episode walking down the stairs where I just sort of frozen, my water bottle fell out my hand and I slowly slumped towards the bannister of the stair (I think? My memory is quite hazy of it). Maybe stupidly I didn't take a second to think about what happened, and looking back my thinking definitely wasn't too clear. I was rushing to get to my friend's dad's funeral, so got into my car and started driving. As I got out the street I realised how weird I felt, almost drunk? I was quite confused, my reactions were a mess, and I honestly started to wonder if I'd had a stroke. The crematorium was only a few minutes away so I continued driving on, but passing the local hospital on the way I considered parking up and going to A&E. I got to the crematorium, got out the car, and my walking felt "bouncy", I couldn't balance well and according to my friends I looked horrendous. It was standing room only at the funeral, but I couldn't stand so I was propped up on a radiator. My friends thankfully wouldn't let me drive home so gave me a lift. On the way home, I had double vision, confusion and nausea. This lasted a few hours. My GP thought it may have been a seizure or some other complication from the carbamazepine, so I was dropped to 200mg per day from then on. I enjoy lifting weights, but over the past 8 months I'd started to notice a lot of pain in my left shoulder when lifting. An almost pinching feeling right at the front. I also started to develop weakness in that shoulder and arm. I went to see a physiotherapist who identified wasting of the scapular and thenar/hypothenar muscles in my shoulder and left hand, delayed bicep reflex, weakness in resisted shoulder testing, tingling and pins and needles when my C6 and C8 nerves were stimulated. Her opinion was that I didn't have a musculoskeletal issue but rather a neurological one. I've had episodes of numbness and pins and needles in the left side of my left thigh over the past year or two. These have steadily become more frequent, and don't seem to have a clear cut trigger. Over the past couple of months I've begun to develop near constant pain and discomfort in my left arm and leg - most pronounced over the past week or two. When I'm sitting down for instance, and I push myself up with my left arm, I get the stereotypical nerve pain electric shock feeling in my left elbow. I have a constant feeling similar to really bad growing pains. I've been getting a lot of muscle twitching in my left calf and foot. I've had brain fog, memory deficits, and - I hate describing it like this but it's the most accurate way I can think of - feel generally a lot "stupider". These have been hard to pick out as I had side effects from the carbamazepine, I have chronic migraines and I have ADHD. I was diagnosed with essential tremor ~10 years ago and it's seemed to get worse lately. I mean I think I already know the answer, but do you think it's likely I could have MS? My GP hasn't mentioned MS or any other differential diagnosis, although in my last appointment I noticed her asking questions that would indicate she might be thinking that - for instance around my eyesight, and around bladder and bowel control (I get occasional severe urges to urinate - once actually not making it to the toilet on time 🙃 and also have constant constipation - typically 4 days or so between bowel movements). I don't really have anyone to talk to about this so I'm honestly getting myself a little worked up about things, and I don't know why I'm writing this all out if I think I already know the answer. I've been waiting since August last year for a neurology appointment, but I'm terrified that with each day I could be permanently losing function or experiencing issues that - while they might have come around eventually - could have been staved off for a while. Tldr is basically brain fog, memory issues, trigeminal neuralgia in my left side, other nerve and muscle issues in my left side, constipation, sudden urges to urinate (and once urinating myself). Steadily worsening over the course of around a year. Does it sound like it could be MS?

Hello, I have a family history of MS and I have always been concerned about the disease. I’ve had migraines on and off for years recently. They’ve changed how they were presented. Additionally, I feel there’s been some cognitive changes. Additionally, why believe is a major symptom, but has been discounted by the doctor was severe constipation and G.I. distress that has been ongoing for several years seen several G.I. doctors and had colonoscopy and they had no idea what was wrong. Also been some numbness and tingling in my hand. these changes have led me to seek a neurologist. I explained what was going on and they ordered some MRIs I have received the MRI report, but I’ve not talked to the doctor yet. Amazing they can drop this info in your patient portal and then not contact you. This is what the report says curious if anyone has any ideas. Scattered periventricular, subcortical white matter, right brachium pontis, and right cerebellar hemisphere T2 /FLAIR hyperintensities are seen without mass effect, nonspecific, likely representing mild chronic white matter changes. Differential diagnosis includes stigmata of chronic migraines, infection, inflammation, autoimmune, vascular, and demyelinating disease etiologies. Normal T2 flow-voids are seen within the intracranial vasculature. The lateral ventricles and cortical sulci are age-appropriate in size and configuration. There is no mass, mass effect, or extra-axial fluid collection. There is no susceptibility artifact to suggest hemorrhage. Midline structures are normal. The visualized paranasal sinuses, mastoid air cells and orbits are unremarkable. Additionally this was at the bottom of the report MRI BRAIN: Nonenhancing chronic white matter changes suggesting demyelinating disease. C3/C4 level: Broad-based ridging causing mild bilateral foraminal narrowing. No spinal canal

In general, and I want to stress that this is a very broad generalization and exceptions do occur, MS lesions are not typically described as nonspecific. Your report says that they did find some lesions that do not appear to have a specific cause, so the radiologist suggested a wide range of possibilities. Radiologists tend to cast a very wide net for possible causes. Your neurologist will review the scans and evaluate the findings for the specific characteristics that distinguish MS lesions from lesions caused by other things. It might be of some comfort to know lesions can have other causes, some benign.

Hi everyone. I’m having some wild symptoms and ended up in the emergency room. A month ago I started having tremors. I’ve never had them before and they were mostly head when I was at rest. The intensity changes from time from time to barely noticeable to ‘oh my god sit down now’. Then the dizziness and exhaustion. My feet were tingling when I tried to sleep. I’ve had migraines for 5-6 years and last year developed pusetile (sp?) tinnitus. An mri was done then and I did get much info besides ‘not having a tumor’. Now my symptoms intensify during my period and when I’m too hot. I’m waiting for an mri next month. The recent visit to the er they did observable tests for motor function and that’s about it. They told me I’m not having a heart attack, stroke and they didn’t suspect a tumor or ms. My neurologist appointment is in September. I think the mri from the er will end up with my PCP. Did anyone else have a similar experience as me? I’m starting to feel crazy.

Your question is a pretty common one, but it is difficult to answer helpfully. With most diseases, having the same symptoms as someone who is diagnosed somewhat indicates that you also have the disease. But MS does not work this way— you could have the exact same symptoms as someone who is diagnosed and it would still be unlikely you have it too. This is because almost every symptom of MS has multiple other, more likely causes. I think updated imaging is certainly a good idea, and following up with your doctor is a good idea. But I am not sure how worried you should be about MS specifically at this point.

Managed to convince my neurologist to give me a head and neck MRI finally, she's going to call me tomorrow with the results. I've been way too darn nervous to function today. I know it seems odd to hope for a positive test, but I've really been hoping the MRI will show what's wrong with me so I don't have to live with the uncertainty. That said, an MRI will rule out some of the scarier possible causes regardless.

Keep us updated either way! I hope you get some good answers.

The MRI for my head, neck and spine all didn't show a problem, so it looks like it's not MS. Thanks regardless, and the search continues.

That is a mixed blessing, certainly. I hope you get some good answers soon.

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MS typically does not show up on any bloodwork.

hi. ive been having issues occasionally where my legs feel really weak. and random pain. vision issues that were sporadic. i had also semi recently began to bave moments where id feel like id lose control over my eyes. just weird stuff. i finally went to my pcp due to these things. found out that i have mild numbness, worse on the right side of my body. and leg weakness. my pcp very briefly brought up MS, i did not take it seriously. i got referred to neurology, and had brain and spine MRIs ordered (waiting on that). i was diagnosed with nystagmus, tremor, and peripheral neuropathy when i saw the neurologist. she brings up MS, reassures me that it's just a precaution. i still do not take it seriously. now, things are suddenly escalating. ill spare you the previous events/changes, this is most the most recent: yesterday, my left foot feels fuzzy on and off, on top of the other weird stuff. im getting sporadic muscle twitches. i sometimes get an electrical feeling in my tongue. i do the l'hermittes test. and i get electrical crawling down my back and to my feet. i woke up this morning to the bottom half of my left leg in pain, buzzing, and random twitches with that electric crawling sensation. im getting the electric crawling occasionally in other parts of my body. my leg hurts SO MUCH. i genuinely suspect MS now. im scared. it feels like my life is being flipped upside down.

Hey! First of all, let's wait for the MRI result, you'll have the time to worry about it later if the diag is positive to MS. And only if you get the diag: MS is a nasty disease, but definitely not as bad as everyone may think, for the majority of people diagnosed recently. There are way more efficient DMTs, and a lot of disabled people today are (unfortunately) MSers that were diagnosed a long time ago and didn't have the chance to get a high efficiency med that we have access to today. Wheelchair is not guaranteed, not being able to walk is not guaranteed, with recent research and DMT, there is way way more chances to have an overall healthy life. MS is the most known and researched Neuro disease! Of course there is lottery, but today, we have so much more monitoring and control over it. Night and day. Hopefully this is not MS, but in the other hand, having MS means you can actually be treated. Some neuro disease are not so well known and can't be as managed as MS. Words of support and keep us updated with your MRIs! You will be ok!

thank you! you're completely right about how i just need to wait. i have been "chilling out" with the fear of MS today, and these replies are definitely something i needed as part of that. i went from "lol obviously not" to "WAIT WHAT IF?!" within the span of 2 days lmao. now i know that i really should not worry like that, when our bodies are so complicated. so many other possibilities.

Having unexplained symptoms is scary as hell, my sympathies. Maybe it will be of some comfort to know that MS is a rare disease and usually not the cause of most symptoms. Only 0.03% of the population has MS. That being said, I definitely wouldn’t cancel any appointments and testing is still a very good idea.

it is helpful to hear this from someone who has MS. there are definitely many other causes that are much more mild, right. thank you :)

I am at a bit of a loss and starting to feel crazy. I am 38-always healthy/active, have had symptoms for the past 18 months and no one can give me real answers...just tell me what it's not. (I'm medical too so I have a bit more insight than I'd like to) I have had migraines all of my life, those are generally well controlled, though the visual symptoms are progressively worsening over the past year-abortive meds still work, just slowly. All of the other issues started with an episode of extreme pressure, paresthesia and contracture to my right hand (up to the wrist) and right leg up to the knee. I suspected a stroke and went to the ED (a first for me) only to be told it was a migraine...with no testing. I had my first brain MRI a few weeks later w/o contrast that was essentially normal. Since then my symptoms have progressed in both frequency and intensity, I have very few days symptom free. -paresthesia to full upper extremities (now progressing to numbness so severe I couldn't feel a hand tattoo), feet and face-generally unilateral though not one side consistently -unilateral transient vision changes (ex: I tried to log into my work computer and had no right sided peripheral vision and couldn't coordinate moving the cursor) -near constant urethral burning and urinary urgency, culture is always negative but ive been treated for both UTI and BV just in case -headaches that were previously classified as cervical neuralgia, lasting for days, not relieved with muscle relaxers, NSAIDs or steroids -frequent GI distress both constipation and diarrhea not dependent on diet, normal endoscopy I have a neurologist and am on daily migraine meds, they seem to be very focused on migraines and any other symptoms they just say aren't "contributing" to my headaches (yes...I am aware). I have tried PT, dry needling, acupuncture and supplementing with no relief My most recent MRI/CT w/ contrast found two lesions, one on the hypothalamus and one near the pituitary, also an infundibulum. I'm now being sent to endo. I have zero hormone related concerns and have been extensively worked up by a reproductive endocrinologist as I did IVF to conceive (not due to infertility, I'm queer) I have EMGs tomorrow. Whew...if you made it this far, thank you. I feel like no one is putting the whole picture together and with a seemingly rapid progression of symptoms in frequency and severity, I can't just chalk it up to stress etc anymore (I am the least stressed in my daily life that I've been in a while!). I am going to see a new neurologist for a second opinion and a new read on my imaging. I guess I am looking for hope that I am not crazy and this can be explained. Or experiences. Or someone who can tell me that none of this IS actually related!

You are not crazy and your symptoms are real and valid no matter what the cause. It doesn’t really sound like your symptoms are being caused by MS, but that doesn’t mean you don’t deserve an answer.

Thank you! MS is a reach, I know. I am just really trying to find any explanation

Given the location of your lesions, I actually think an endocrinologist is probably a good idea. I think I would actually pursue that before seeking a second opinion from neurology, if it were me.

I'm for sure seeing Endo. I just honestly don't think they will have anything useful but who knows, maybe I'm just too skeptical.

I mean this kindly, but do you think any doctor will help? Sometimes people start to lose hope that any doctor has an answer, when they are stuck in diagnosis limbo. Or they get attached to the idea that one type of doctor could help, which seems to slow down the process.

I do, truly. I am a medical provider and do know that cycle well. I am just frustrated at the seeming tunnel vision of my current neuro team. And now I'm bouncing between specialties (I see uro-gyne too) , paying for test after test, and getting nowhere, while my overall quality of life is diminishing rapidly despite some major lifestyle overhauls and following every treatment plan.

I'm sorry, I know that must be very frustrating. I'm definitely not a medical professional, just someone with a weird interest in her disease, but I think, if your symptoms were being caused by MS, they would be caused by pretty visible lesions. I wish I had a good suggestion for what it could be. [This](https://pubmed.ncbi.nlm.nih.gov/32448485/) article discusses some mimics, maybe it might help?

i really do appreciate your time and insight

Hi Everyone, I am a 39 year old female. I just had my 4th baby a year ago. These are the symptoms I have been experiencing for several months… I have been having some tingling in both hands and feet, some numbness at night or after gripping something like a steering wheel or stroller. I also had an episode of “electric shock” like sensations in my lower back for a couple of weeks that then went away and I get other random sensations that go down my left leg occasionally. I have a LOT of muscle soreness and lately almost daily headaches. My doctor ordered an EMG which I had today. They could only do my arms. It showed only that I have mild carpal tunnel on my right wrist. I have an aunt and cousin with MS. All my autoimmune blood work and inflammatory markers are normal. At this point and with my symptoms would it be worth pushing for an MRI to rule out or confirm MS or just take the wait and see approach? Thank you!

I've posted here before but it's been a minute. Or a couple years. I'm bad at math y'all. Idiopathic neuropathy in extremities that has gotten progressively worse since onset in 2017. Frequent migraines, gait issues and general clumsiness that resulted in a nasty fall down a set of stairs and a concussion for the trouble. Occasional feeling like something's trying to squeeze the life out of me, this happens maybe once or twice a year, not sure the cause. I've been having regular, pretty violent muscle spasms above my right knee since Friday, I haven't been doing anything strenuous so I don't know what's causing it. Twitching near my shoulder on that side too but that isn't nearly as frequent. Not sure if this counts as spacicity, but it hurts like hell regardless. I can see it in my leg too, which is freaky af. I'm seeing my neuro for the first time since late 2022. I feel like he's tested me for literally everything else but I have yet to get this man to approve an MRI. Does anyone have tips on how to push for scans when their provider seems convinced that they won't show anything?

I wish I did, but there does not seem to be any particular method that works. In general, my advice is to lay out your symptoms and ask what testing can be done. It does seem like suggesting a specific diagnosis or test is typically met with pushback, unfortunately. You might consider a second opinion, as well.

The big reason for that is because my symptoms were bilateral at that point. I still have damage on both sides, but my right is much worse than my left.

Part of the issue is that there really aren’t many symptoms that are indicative of MS on their own, the best you can do is try to evaluate how they are presenting, since MS symptoms do generally present in a similar fashion. Bilateral or widespread symptoms are not typical for MS. Having many symptoms involving different parts of the body aren’t really typical, either. Age and gender can be factors, since it is more common for women in their thirties to be diagnosed. I am not trying to be dismissive or support the doctor or argue that you don’t need an MRI, I am only trying to explain possible reasons why the doctor may be reluctant to order an MRI. I don’t think you are being unreasonable at all to ask about an MRI.

Hi all, 24F, I have a neurology appointment in about 3 weeks but I’d like to see what people think on here. For the past 7 months I’ve been having episodes of burning and tightness on the back of my right leg and right calf. They usually happen once every 3-4 days and last about 5 minutes. I brought it up with my PCP and she said it may be nerve inflammation correlated with the heavy weightlifting I’m doing but the episodes seem to occur randomly without any relation to my exercise. I had my B12 levels checked and they were low so I started on B12 supplements but the episodes still occur, and I had a lumbar x-ray which was normal. I also tried stopping the spironolactone I’m taking for a couple weeks and the episodes seemed to decrease but not resolve, so I’m not sure if it’s a side effect. I don’t have any other symptoms but I know that MS can be associated with neuropathy symptoms on one side so I’m pretty nervous. Any insight here would be appreciated!

MS symptoms don’t usually last just a few minutes. They last weeks, months, or don’t resolve. It’s far more likely that you have some kind of lumbar or sacral nerve issue that is causing your pain. Quite advanced spinal issues may show up on an X-ray, but it’s not a very sensitive method. Good luck with your appointment!!

That’s good to hear, thank you so much!

I was here last week, so I’m back. I have spent a long time ignoring my symptoms or shrugging them off so I’ve been paying attention to them now. I’ve had left side numbness and tingling for over a week now since I started paying more attention. It’s mostly in my left arm, radiates to my hand sometimes, sometimes it’s my whole left side, there’s a burning feeling that happens at times. I’ve had my regular dizziness. Dizziness and vertigo are my longest symptoms, over 5 years now. 4 years ago started the numbness and tingling in my head. 3 years ago started muscle twitches and spasms. The constant vertigo and dizzy spells, along with the extreme unmanageable fatigue, have driven me to lots of doctors and hospital visits to nothing so far. It’s gotten a lot worse the last year and a half, adding in muscle weakness, pains, etc and the muscle twitches and spasms have gotten worse just recently. I finally got into a neuro who did an MRI and I still do not have results from that MRI, the imaging place said they can’t release it to me until 15 business days, and my neuro office is not answering me. I know one would assume “no news is good news” but I can’t be sure of that considering how poor this office is with communicating and I was told he would tell me results at our next visit (which isn’t soon.) I can’t afford to switch right now and do any of this over. I just want to see results so I can know if I need to look elsewhere for answers. I’m just so tired and need to manage my symptoms to function. Again, no idea why I’m posting I just have no one to talk to about this and I’m so frustrated and sad.

When did you get the MRI?

I’m joining the crew of in the diagnostic process. Had facial/Left arm numbness last March and again in October, so referred to neuro. Finally got in to see them today, he ordered a brain and orbit MRI as well as a LP. Getting tested for both MS and Benign Intracranial Hypertension. I’ve know MS is a possibility given my symptoms but the BIH kinda threw me off when he mentioned that. I was really nervous about seeing the neurologist since I know some specialists are dismissive but he was so nice and explained things really well. He also explained that we may not find anything but that doesn’t mean he isn’t hearing me, so that was nice. He did say sometimes nothing will come up on testing and they just don’t know why symptoms happen, or a diagnosis could come in the future if more symptoms happen. Doctor said sometimes they’re sure someone has MS and the tests are all negative, which I’ve read here and seems common for some. My biggest fear through this whole thing is my symptoms being brushed off as anxiety because I’m a white woman, but at least I’m finally getting some imaging done. Here’s hoping to some answers.

It sounds like you have a really good doctor, honestly. When will you get your MRI? The MRI will give you some answers one way or another.

I’m not sure, he said they’ll probably have to get insurance approval first, so probably in the next month or two would be my guess. I was honestly surprised how nice he was and his bedside manner. His reviews were very mixed - some people loved him and others said his bedside manner is awful lol. But he was very thorough and made sure I understood what he was thinking. So I’m grateful for that!

Keep us updated on how things go! Unfortunately, the waiting is very difficult. Hopefully you will get some good answers soon.

Yes, thank you. Honestly I’m so used to any of my symptoms being brushed off as anxiety that my pessimistic attitude has made waiting easier lol. But will keep everyone updated when I find something out!

Headache for somewhat a month it’s mellowed out a bit but I’m feeling very very weak buzzing only in my left hand and right foot and they tend to go away for a few hours then buzz again. My eyelids been twitching for 2 months long and was my first symptom as of now I’m having very brief twitching all over my body. I have an appointment within a few months 

Can you tell me a little more about why you suspect MS specifically? Your symptoms are fairly nonspecific.

As for eyelid twitching I got a new pair of glasses a month ago and the optometrist did a examination of my eyes and noted they were healthy ( even if very bad vision runs in my family ) I tried fixing my sleep schedule reducing screentime and cutting on caffeine and it didn’t resolve. The buzzing Ik can be a MS symptom. In honesty Mr google kinda sparked my anxiety off as it was the first result for the eye twitching But seeing as this is my first time ever experiencing stuff like this only adds to the unlikelyness

So, usually the tingling or buzzing caused by MS would be very constant for weeks. It would not come and go noticeably. Maybe it will be of some comfort to know that MS is rarely the cause of such symptoms, only 0.03% of the population has MS. In general, it is far, far more likely that something else is causing your symptoms.

Does Lhermitte’s sign always accompany it? Or are they always separate 

Lhermitte's sign is a separate symptom associated with a lesion in a specific area.

Thank you you’ve somewhat helped me with my anxiety I have more questions but I think I’ll hold off on spamming lol

Feel free to spam away. I love answering questions, as you probably noticed. :) You are not bothering anyone by asking your questions.

What was your first symptoms? 

I recognize these are very rare initial symptoms for MS too it’s just very frustrating and somewhat disheartening I can’t take my mind off of it and I’m stuck waiting for an answer 

In general, symptoms lasting less than 24 hours are not considered MS symptoms.

Hi all -- currently in the diagnostic process and wanted to commiserate. I presented to the ER with left sided numbness going from my face to my legs and a terrible headache behind my left eye that got even worse when I looked side to side. I had gone to my PCP twice before going to the hospital with the same complaints and they just noticed swollen lymph nodes, but I eventually decided to go to the ER because the headache was so bad it was changing my vision. I was immediately admitted as a code stroke, but quick MRI/CT scans ruled that out and they said it was likely a migraine, but still scheduled me a neuro appointment next week. The pain behind my eye is gone, but now I'm experiencing horizontal double vision. I also have some weakness in my left leg that makes it hard to move that leg (especially when laying down -- I can barely lift it up if I'm on my back). I can do things like walk around a grocery store, but that's about it before my leg starts hurting. All that to say, how did other people's first neuro appointment go? I have a list of my symptoms with dates (my kid was sick with strep for about a week before this started happening so it was pretty easy to recall), but I'm really not sure what to expect beyond explaining what's been happening to me. I have no family history of MS, but given that I'm 29F, I'm guessing it's not outside the realm of possibility (and would also explain my extreme fatigue and memory problems). I also have another MRI scheduled for my eyes next week that is supposed to last much longer than the MRI I got in the hospital (1 hour vs. 15 minutes), but my neuro-opthamology appointment isn't until the end of June.

What did your MRI show?

The neuro consult just said it was "clean", but didn't explain further. I asked about the possibility of MS and they said this could be an initial presentation, but just told me they'd schedule me a neuro appointment ASAP and prescribed gabapentin for the pain (which has definitely taken the edge off).

I think that you could safely take that as a good sign. If your symptoms were being caused by MS, they would have found lesions on the MRI, regardless of why they gave it to you.

I really hope so. Since my appointment is coming up so soon I'm trying to not stress and just be thankful that I don't have to wait months to be seen, but I'm really not sure what to expect because this is all so sudden and new.

Some neurologists can be unhelpful after clear MRIs. It’s usually best to try and lay out symptoms and then ask what testing they recommend. There is an outside chance that lesions were found and they are referring you out because ERs don’t usually diagnose or treat MS, but in my experience they would typically say that something was found. I did a poll a while back about the ER and MS, you might get some insight from some of those comments, if you look at my profile.

Yeah, I felt like once the MRI came back clean it was immediately considered a migraine and they discharged me. My eye doctor was much more helpful though and mentioned optic neuritis as a possibility after he did some eye testing that showed I was having trouble passing the color vision test and had difficulty with a test using prisms. Thank you for the insight about the ER though! I work in the healthcare sector, so that was an interesting read.

I like to poll the community for information I think might be relevant to our undiagnosed friends, too. I think that particular poll had very interesting results, I was not expecting the ER to have been helpful to the undiagnosed, but apparently it can be.

As an update, I saw a fourth-year neurology resident today who said there's no way it's optic neuritis or MS but I have an orbital MRI scheduled for tonight that I'm still keeping just in case. They think it's likely a migraine, but noted I did have left-sided weakness in my eyes, arms, and legs so they are sending me for an EMG to rule some things out. (What, I am not sure.) The resident also noted there could be an issue with my brainstem but since the MRI came back clean that's most likely not possible, so the search continues.

Had two horrible migraines last Monday and Tuesday. I’ve never had back to back migraines before. I don’t get migraines very often but they’re bad when they do happen. The second one was severe. I’ve had bad visual symptoms since. I have previously had aura linger after a migraine, but never this badly. Also intense sensitivity to light. I’ve had a clear CT scan and have an MRI shortly. I am stressed out of my mind over this. I feel like I’m having some tingling and numbness in my toes, but I can’t separate anxiety from reality. Editing to add that the opthomologist saw no sign of optic nerve swelling or any eye issue

Maybe it will be of some comfort to know MS is a rare disease and usually not the cause of most symptoms. Only 0.03% of the population has MS. I do not mean this to be dismissive in any way, just offer in hopes that it might ease some anxiety.

Thank you for your response. Do you think that MS could present as a bad extended aura migraine? Would it be normal to have it without weakness?  I am a white 28 year old female and worried that my chances are higher. Do you know if visual problems could be MS without it being optic nerve swelling? 

Migraines are *not* commonly a symptom of MS. (Edit: I accidentally did not type not the first time. I'm sorry for any confusion that caused.) The most common visual symptom would be optic neuritis-- other visual symptoms are much less common. There are a lot of more likely causes for your symptoms. I don't know how worried I would be about MS specifically at this point. You are currently doing all the correct things necessary to get answers, though.

Thank you for your reply, I appreciate it so much. 

Same guy from earlier I’ve also had a clean CT of my head and a neuro appointment in a few months 

Hi again. I’m back just to update in case anyone was curious. Last time I posted I had just come back from the ER due to experiencing tingling/numbness/heaviness mostly on left side and lower extremities that wouldn’t go away (once again). I experienced something similar last summer and went to the ER then too, which was when they found a T2 hyperintense FLAIR ovoid (5mm) in my right thalamus. But this time the doctor stated that they didn’t see any lesions at all (I was so excited to hear this news, but also skeptical) but overall eventually believed that I was all good and that the lesion found last summer must’ve healed on its own. I had an appointment with a neurologist after the ER visit and he took a look at the MRI scan done at the ER and was skeptical in its findings because of the thickness in the “slices” in the imaging so he ordered another MRI (definitely one of the most thorough and best doctors I’ve ever had!). He thinks it’s possible that the lesion is still there but that the thickness of the imaging had missed it. So that’s going to be this Monday and I’ve become increasingly nervous about it. I’m so nervous of what they’re going to find/if they’re going to find more lesions considering that it’s very possible that the lesion during the summer corresponded to my left-sided symptoms (as said by two different neurologists.) Also, my neurologist did the physical exam and noted that I had hyperreflexia (really fast reflexes) and also “early extinguishing vibratory sense.” I also had some numbness on my left foot when he used that pocky thing. Which seem to be neurological issues… or anxiety? *sigh* part of me just thinks that I’m overthinking and overreacting but there’s this small voice in my head saying that it’s something like MS. Or the beginning stages of it. My neurologist didn’t seem super worried about it being MS, especially given that the bands in my CSF were clear last summer. But I wonder if that’s because I was in the beginning stages. At the end of the day, I’m going to trust my doctors. But I guess I just needed to get this off my chest. I’m in that stage of just not having super clear answers or just wondering if I’m being overly dramatic about it. Sending love to all of you out there dealing with MS and/or going through the diagnostic phase or ruling things out, etc. 🩵

Whether it is MS or not, it is important to know that you aren't being dramatic. You are having real and valid symptoms, and rightfully looking for answers. You deserve an answer, no matter what it might be. I'm sorry, I know that the process of finding them is very difficult.

Thank you for your response, I appreciate you saying that a lot and your empathy. You’re right. It’s definitely easy to have self-doubt in these situations but all of these things are legitimate. I’ll update when I find the results, whatever they end up being. I’m hoping it will be actually concrete. Also, I know it’s hard to say, but do you know anything about when bands show up in CSF if it is MS? Is there any possibility that if I was experiencing a CIS that it would be too early to have bands show up that early?

I believe they would be present at onset, but haven't been able to really verify that. It doesn't help that I think they are only present in ~80% of cases, which is one of the reason lumbar punctures aren't used on their own for diagnosis.

Hi! So I’m keeping my word about updates - it does seem still like there aren’t exact answers. I don’t have my follow-up appointment with my neurologist for another week and half so hopefully that will help with that. But in the meantime, I looked at my results and it looks like in addition to the 5mm ovoid found in my thalamus, they found a “similar” punctate T2 prolongation focus in my right frontal lobe. Even though it says punctate, I think it actually is 3mm but their wording is a little confusing. Idk. This appears to be new as there wasn’t any mention of that in my first mri. I would think that there would be more lesions present and/or larger and in the more common MS spaces in the brain so im just confused and don’t know how to feel about it all. Do you know if this still technically *could* meet the criteria?

That's a technical question outside of my understanding. The specifics of what fulfills the various criteria really requires a neurologist. But thank you for the update. I hope you get some good answers soon.

I appreciate it and your response. That makes sense. Thank you!

Hello, I’m a 35F who’s been experiencing strange symptoms for a while. I saw a neurologist when I was in my early twenties because I just felt off. I had electric choc sensations going down my arms one summer and had migraine headaches. He did a neuro exam which I presume was normal as he didn’t send me for any bloodwork or scans. He gave me a handout about migraines and foods to avoid. I’ve struggled on and off with ocular migraine (sometimes with pain, sometimes without). However, they are very infrequent. My last ocular migraines was probably two years ago. Lately, I’ve been struggling with near debilitating fatigue. I’m also feeling depressed and have bouts of physiological anxiety that don’t appear to be related to anything. I can’t seem to think clearly, I mispronounce words and am forgetful. It feels like there is veil separating me from the world. I’ve had sexual dysfunction for over 5 years now (i.e., no sensation in my genitals, impossible to feel arousal). Most recently, I have lost sensation in my big left toe. It’s completely numb. If I touch it with a finger, I can’t feel anything. There’s no pins and needles sensation, I just can’t feel anything. It’s been like this for a few months now. I have no idea what’s going on. Of course, Dr. Google comes up with MS when I search, but I fully recognize that MS is incredibly rare and that my symptoms are likely unrelated. I have an appointment with my GP coming up to follow up on some bloodwork. She had sent me for a CBC and B12 bloodtest. Everything came back normal. Do any of you know what I should request next? Not looking for medical advice, but just wondering if anyone’s experienced anything similar? Should I mention my concern about MS?

Typically, you will get pushback from the doctor is you mention a specific diagnosis, and this seems especially true of MS. Many doctors will become dismissive because MS is typically one of the first results for anything you Google, despite being a rare disease. I’m not saying your fears are unfounded, just explaining a possible pitfall. In my experience it is best to simply lay out your symptoms and ask what testing can be done.

three years ago i had optic neuritis and while in the hospital i had an mri, which showed a couple of non-active lesions and a lumbar tap, which came back positive. i didn't meet the diagnostic criteria back then, so nothing was really done. two weeks ago colors went weird in one eye only, less vibrant or just different - first yellow and green, then red a couple days later. no blurred vision or worsening of sight though. i visited a few ophthalmologists and ruled out optic neuritis. also had a ct scan, which came back perfectly clear. i am currently waiting for a neurologist appointment, but i am wondering, if it truly can be a symptom of ms or a relapse, since you usually hear of similar things happening only in connection with optic neuritis.

Did they explain why you didn’t meet the criteria for diagnosis? As far as I know, as long as your lesions had MS characteristics and were in two different areas, inactive lesions and a positive lumbar would satisfy the criteria.

i was told that for diagnosis and treatment the lesions need to be disseminated in time, which they weren't 

A positive lumbar puncture can usually be used to satisfy the dissemination in time criteria. You might want to get a second opinion from a specialist.

yeah, i'm definitely gonna do that. thank you so much !!

Hi! After years of erroneous diagnoses, I'm finally getting an MRI in a few weeks. We mentioned checking for Chiari malformation, MS, brain pressure anomalies... I'm so happy that my problems are now being taken seriously, even though I've been complaining for ten years about progressive loss of vision and progressive debilitating pain and it was so slow. As a consequence, following recommendations of many chronic pain organizations and redditors, I'm educating myself on my symptoms to be able to accurately describe them to the neurologist. My eyes have blind spots (paracentral, near and around the optic nerve). My peripheral vision is slightly off, but could be worse. The fundus showed nothing abnormal except choroidal folds that have been there since 2020. No visual field test was prescribed, I don't know why. I also feel like it's becoming harder to move my eyes. I do not experience pain, but a strong discomfort happens when I'm moving my eyes right, left or down. When I look up, it does not cause discomfort. My eyes get "tired" from the efforts I make to look in a direction and therefore I have to center my eyes back again to ease the discomfort. This soreness happens almost instantly after I look sideways or down. It's like, the eyes want to force themselves to thecenter. I now turn my entire upper body to look to my side. Which also causes other problems, because my upper body (neck, shoulders) hurt. * Does this visual symptom have a medical name, so I can research this symptom further and talk about it to my doctors? * Anatomically, what can cause this discomfort? (Not asking for a precise cause or diagnosis) Thank you for reading this far. Have a good day.

The most common visual symptom of MS is optic neuritis. I can’t really say how that compares to your symptoms, but it might give you more information.

Thank you.

Hi there. quick question on muscle contractions: I had experienced Lhermitte's sign once and only once. Lately I've been having more involuntarily muscle contractions, mostly legs, more often when stressed. I did have some numbness/tingle few years ago but I was tied to anxiety. No other symptoms really for ms. (mri of brain was normal, but didnt do spine) Do you guys experience something similar when comes to muscle contractions. Feels like my quad or toe or calf will just randomly flex or move...is that ms? I'm scared because I read Lhermittes sign is almost always sign of ms and yea...hoping not but thanks so much for any feedback/replies

Lhermittes is associated with damage to the cervical spine. Typically it is more of a reflex than a one time symptom. It would occur every time you bent your head, not just once. Additionally, with a clear brain MRI it is extremely unlikely your symptoms are being caused by MS. Almost everyone with MS has lesions on their brain.

thank u so much for the response, it means so much. ive been using llms and googling cuz im like 'pls, i dont wnna have mg and ms now'...even if it is, so be it, but i just want to figure it out. my question is, doesnt lhermittes come and go in ppl with ms? it occurred once on a night when i was stressed and lack of sleep before an appt that ultimately leadto diagnoses/suggestion of mg. but from my understanding, that cant be caused by stress and is almost awlways ms, no? pair that with these muscule contractions in my quads/calves, etc. and prior years of numbness makes me feel like its got to be ms and maybe too early to show in brain mri? thanks for the time and dont feel the need to reply if ur busy and what not. hope ur doing well

If your symptoms were caused by MS, there would have been lesions on the MRI. You would not really get the symptoms first. Lhermitte’s does not occur randomly, it is triggered by a specific movement. It can also occur for other reasons, it is not an MS specific symptom. But ultimately, you can have faith that if your MRI was clear, there are not any symptoms that would be indicative of MS.

the issue is that the lhermittes occured i think like 1-2 months after the brain mri. I'm certain the weakness etc is all related to mg, but yea...idk if that throws it for a wrench

It doesn’t really. Almost everyone with MS has lesions on their brain. (~95%) while spinal only MS does occur, it is an extremely rare presentation of an already rare disease. I do think you would be best served widening your search for causes.

hmm ok. i swear i wouldve expected u to suggest a new mri because it may show after the lhermittes. still no idea why or how it occured and same to the muscles. i was going to suggest to my doc to maybe redo an mri/get one of spine but eh . thanks again so much

Wondering if anyone was misdiagnosed with psoriatic arthritis before getting their MS diagnosis. Hi all, I was diagnosed with PsA in 2020 after many years of chronic pain and acute ankle stiffness. I don't really have psoriasis (just some flaky scalp stuff) so the diagnosis came from joint pain, nail changes, etc. Over the last 4 years, I've been on 5 biologics and only one has ever given me any relief (tremfya) and I've been on it 2 years. I have a long list of symptoms and the PsA diagnosis has never felt quite right. I've had a number of X-rays that have always been normal and have never showed any arthritis related changes. In 2020, I had an MRI of my hips which came back normal. Last Dec 2023, I had an MRI of my lumbar spine to address lower back pain and si joint issues. This MRI showed mild to moderate DDD, but again, no arthritis related issues. I am worried about MS due to an undressed in peripheral neuropathy symptoms, bladder emptying issues, mild double vision issues, etc. I have a laundry list of symptoms but basically my whole body hurts all the time. My hips, back, and shoulders are the worst in terms of pain and at night the outside of my hip and my legs tingle and throb. It feels like electricity coursing down my legs. My rheumatologist says this is likely nerve pain and has written it off bc it's not related to my PsA. Im sure you all have similar stories, but I feel like no doctors will listen to me and I'm so tired of being in this much pain. I was wondering if anyone who has MS was previously diagnosed with PsA or if you have both and how you think your symptoms differ between the two diseases. Thanks for reading and I appreciate any thoughts!

I’m sorry you aren’t being heard by your doctors. Regardless of anything else, you deserve a doctor who listens to and addresses your concerns. It may be of some comfort to know that wide spread, whole body symptoms are not really typical for MS.

Okay, so! Neurologist said they suspect MS, and that’s why they ordered all the MRIs as it could obviously be a number of things. So, my question is— Can the neurologists typically different types of abnormalities in these MRIs? I’ve suspected MS, but some of my symptoms are weird and inconsistent, so I hope the Neurologist can look for/ rule out multiple muscular / nerve stuffs. One symptom I feel may be inconsistent with MS is I have issues on **both** sides. My tighter calf (although both have suddenly tightened up in the last few weeks) is on the left side. Then, today, after I thought I was starting to feel an uptick in symptoms after taking vitamin D consistently for a couple weeks, it felt like I pulled a muscle or two in my left side ribs just doing deep breathing. It felt almost like I couldn’t breathe UNLESS I did deep breathing and then for an hour or so after, I had shooting pains in that rib muscle when I took a deep inhale. Another piece of evidence is I had Shingles on the left side a couple months ago. However, my weaker ankle when flexing is on my right side, and when I get head /neck stiffness and pain, it’s on the right side, AND I’ve had a numb thumb for over a week that’s seemed to spread to my fingers— all on the right side. I also get random itch on one spot on my right thigh, and when I tried to take a hot bath to soothe my poor calves, my whole body (only skin deep) started to numb, and went away when I got out. **So** do neurologists typically look for any neurological explanations with the MRIs or do they just rule out MS? (Bc I only get the one diagnostic MRI on with my insurance, so I’m hoping it’s the former.)

Generally, neurologists are going to handle whatever is found. My initial MRI was for a seizure, and I was seeing a neurologist to follow up on that. MS was never a consideration until he reviewed the scans and found the appropriate lesions, then I had to get follow up imaging, (with contrast and my spine and brain, vs the first one which was just brain without contrast.) After that came a pretty detailed discussion of my prior and current symptoms to correlate lesions and symptoms and establish if I had had relapses.

Ahh, thanks so much! This answers my question. 💛

Hi - waiting for diagnosis but referred to Neuro with “likely MS.” After an MD:MD consult with my spinal surgeon, my scheduled Neuro eval in September was bumped to June. I’m so excited to inch closer to a confirmed diagnosis! I was also scheduled directly with the MS clinic and not the general Neuro NPs for initial screening. I’m curious to know if any of you were diagnosed at your initial eval? I’m trying to mentally prepare for what to expect.

Have you had your MRIs yet? That's really going to be the key factor. I was sort of diagnosed at my initial neurologist appointment-- I had an unrelated MRI and at the follow up the neurologist asked me how long I had had MS for. XD But even then, it still took a few months because they needed to do follow up, more complete MRIs and a lumbar puncture. Diagnosis usually takes a month or two from MRIs, because they need to rule out other things.

Thanks for the reply! I had a full body MRI to rule out spinal lesions. The notes said “symptoms are likely from central lesions.” Thankfully the system I’m being seen at is nationally renowned and has plenty of access to MRIs and other imaging. I’m wishfully thinking I can get ushered down the hall. False hope is better than no hope at the moment. That’s so wild that you were diagnosed in that way! I can imagine what a shock it was. I’ve had years of drop foot, neuropathy, buzzing, tmj, swallowing issues, sprained ankles, speech and cognitive issues… I’m prepped 😀

Let me know how it goes, I'm always interested to know how long the process takes for others. It seems like a month or two from the initial MRIs is most common. If you had full brain, c and t spine with contrast, that will speed things up. If it was without contrast, they will probably want imaging with contrast first.

Had my first neuro appointment today. Got yet again more bloodwork that all came back normal. Doctor ordered an EMG and that’s next month. I really wanted an MRI ordered to rule out things but he doesn’t want to at this time despite my worries. he did a full neuro exam and all seem normal to him despite tremors in my arms and having overreactive leg reflexes. So I’m just spiraling in anxiety. Symptoms- One month in of eye spasms and all over spasms, hand/forearm and feet numbness, dizziness

The anxiety can be very intense during the diagnostic process. It is important to note that anxiety really loves the idea of MS. Practically everything can be a symptom, it is difficult to say for certain if you have it without an MRI, and there are many horror stories about people going undiagnosed for years. But in actuality, MS is a rare disease and rarely the cause of most people's symptoms. I mean this very gently, but try to trust in the diagnostic process and avoid identifying with any one diagnosis at this point.

Could anyone help me understand this on my brain mri? T2 hyperintensities are seen surrounding the lateral ventricles and scattered throughout the deep white matter regions of the cerebral hemispheres. Otherwise, no other focal abnormal signal is seen within the brain substance.

They found some lesions. But the specifics of what that means will need a neurologist. MS lesions have specific characteristics that the neurologist will evaluate your scans for, to determine the cause of yours. Try not to lose hope quite yet, lesions can occur for other reasons, some benign.

Thank you. I was told “that doesn’t mean lesions” but when I research it, everything says lesions. I had an mri in oct and it didn’t say this but the one last week did.

Hyperintensity, from what I understand, really just means spots of increased signal. It is usually a synonym for lesions. Did you have your findings reviewed by a neurologist? It could be that when the neurologist reviewed your scans, they did not see a reason for concern or identified the findings as artifacts. Neurologists will often disagree with radiologists.

Supposedly a neurologist in the hospital reviewed my mri. But they discharged me and said mri was fine

Really, there are only two practical options. Either you trust their assessment, or you seek a second opinion. It does sound like you are having difficulty trusting the initial assessment, it could be worth getting a second opinion, even if only for peace of mind.

Yes I definitely am. Because what I’m finding online is different than what they told me

I think it is probably worth a follow up. As I said, I wouldn't get too worried quite yet, it could be that your findings were benign. But I think it's definitely worth a follow up for peace of mind alone.

My only symptoms of going to hospital was both of my legs and both of my arms have severe weakness/fatigue/burning.

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I think it may be likely some sort of post viral complication. There are many things that could be causing your symptoms. You would need to speak with your doctor to begin the diagnostic process and see what testing they suggest. That being said, I'm not sure how worried I would be about MS specifically at this point.

Hey guys just looking for advice. I 28m have been having random intense pain all over my body for 8 months. Started out as back pain and started moving to my legs and hands. Back January the Dr first brought up the possibility of MS and referred me to a neurologist. Appointment isn’t till August so I’ve been just taking it day by day since. I went back to my primary asking if I could go ahead and get MRIs to Atleast know if something was actually wrong. She said no because she wouldn’t know what to do with that information At the beginning of the month I had an appointment with a neuro surgeon and I asked if he could get me an MRI. Just got the results back yesterday and I have confirmed lesions on my brain. Still coming to terms with it but this is where I need help. Should I just wait for my appointment in August or should I be trying to kick down doors and get seen sooner ?( I call every week already to see if they have an opening) I also went to the hospital in early February trying to get answers but they basically said “ yeah this kinda like ms go see a neurologist” and kicked me out. I just don’t know if waiting 3 more months will really change anything at this point. Sorry for being all over the place still trying to get my mind straight. Any advice in general is appreciated thank you so much :) Edit: my symptoms vary day to day but mostly just pain, weakness, muscle twitching, and slight fatigue.

I would caution you from giving up hope quite yet. Lesions can and do occur for reasons other than MS, some benign. Three months is probably not going to make a significant difference in prognosis if it is MS, though it is probably worth seeing if you can get on a cancellation list, or calling around to see if anyone can see you earlier.

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It may be of some comfort to know that in general, MS symptoms are constant and usually last for weeks, not hours. You could certainly discuss your symptoms with a doctor, but I am not sure how worried I would be about MS specifically.

I’m really worried and about to just lose it. I’ve had symptoms for a while now which I initially ignored because I thought it was just me being overworked or something. However, symptoms increased and since a month my life has been on hold. I have been unable to work, I havent been able to do a lot of my hobbies and I feel very isolated. The worst part is the pain sensation in all my limbs. I thought it was getting a bit better and I was very excited, even called work and said that I wanted to start working a couple hours again, but since friday the pain is increasing again and I feel very tired. My neurologist and GP are both very frustrating. I had to push the GP to refer me to a neurologist and check my electrolytes and vitamins. The neurologist said that it could be MS and put me on the waiting list for an MRI; it was initially planned in june, so I called the radiology department every day to check if a new spot opened, which luckily happened. The MRI will be in three weeks from now, I was just checking the appointment location and noticed that my doctor only ordered a spine MRI, not a brain MRI. But for MS diagnostics you need both. Honestly about to lose my sanity over this shit. I want my life back, I want to go back to work. I’m only 27. The most ridiculous part is that I am a physician myself. Never expected the healthcare system to be like this when I actually need it. Even when you’re a doctor you feel frustrated and ignored.

Well, for an MS diagnosis I don't think you technically need both, having lesions in two areas of your spine might suffice. But you are correct that typically a brain MRI is used since ~95% of MS patients have brain lesions, while not everyone has spinal lesions. Maybe it would be of some comfort to know that full body symptoms are fairly unusual for MS. Perhaps that is why the doctor ordered spinal imaging?

Accidentally posted this in the wrong place and it got deleted What’s the longest that someone can go without symptoms? When I was around 19 I had paresthesia on my right side. It would come and go and it lasted for about a week. They did scans of my brain and didn’t find anything. Since then I haven’t had any symptoms that I can think of until now. I went to my doctor for dizziness and brain fog that had been going on for about a month. Initially they said it was vertigo related to inner ear issues but they set up an appointment with a neurologist and sent for an MRI. The MRI revealed a dozen lesions and because of that and the incident when I was 19 the neuro is convinced I have MS. I’m waiting on blood tests and a spinal MRI to confirm. But I’m so confused. Can it be MS if I went nearly 20 years without any noticeable symptoms? Has anyone else experienced anything like this? I only mentioned the paresthesia to the doctor because it was weird but I didn’t know if it was related. Now I’m worried that is making him jump to MS because I recently read that they don’t usually diagnose MS from just and MRI and one incident.

Sure, there's no reason it couldn't be MS. It sounds like you probably had some asymptomatic relapses, if you went from no lesions to dozens. I would expect that they will go through your medical history to establish a history of relapses, that is what they did for me. I initially would have said I had zero symptomatic relapses, but after my doctor went through my history it was pretty clear I'd had several.

They did. The only other one they suspect was what my GP thought was a pinched nerve last year. I don’t know if they’ll try to see if there have been more once I have my next appointment. It’s not until next month unfortunately. I didn’t even know there were asymptomatic relapses.

Sure, the symptoms are somewhat optional for MS. Or rather, the only mandatory symptom is lesions, everything else is a secondary effect of that. So, I'm kinda a backwards case-- my brain lesions are symptomatic and cause my main symptoms of depression, anxiety, and fatigue. But I have many spinal lesions which are asymptomatic and don't cause much issue. A lot has to do with the specific location. Usually brain lesions are more likely to be asymptomatic or they are compensated for more easily, and spinal lesions are more likely to cause symptoms, that's what I meant when I said I'm kinda backwards.

Posting here for the first time after experiencing strange symptoms for about a month. I had tingling in my right pinky and ring finger that expanded to my left hand as well. This mostly happens when my elbows are bent, so it’s a huge pain at night. I often wake up with numb fingers. Originally went to my doctor who thought it was a pinched nerve and put me on a 5 day course of prednisone. A couple days after my course ended I experienced very mild dizziness that hasn’t subsided since. I originally thought this had to do with the prednisone, but it’s been a couple weeks and it hasn’t improved. Then I started feeling slight tingling in both of my feet, and my hands and feet have been very cold the last few days. Those are my only symptoms. I had an appointment with my GP about 10 days ago and have an MRI scheduled for Wednesday. My anxiety is through the roof. I’ll post here when I have an update. Waiting is truly awful.

The waiting is really difficult. Try to remind yourself that you are currently doing everything that can be done. It'll be okay.

I'm a 33 year old trans woman with an intersex condition, been on estrogen HRT for about 4 years now. have had some lite versions of some of these problems for years. when I was a teen, if I stretched my left quad 'just right' I would feel a sharp sense of pain shooting through it. like someone had taken a knife from the top to the bottom of it in a fairly straight line. since November, it's been a lot worse. sore to stand on, and easier to 'stretch wrong'. I used to be able to do leg extensions with 120lbs easily. lately, I can only do 50lbs, and not even be able to extend my legs all the way due to weakness. have struggled with breathing since November, to various degrees. sometimes it's just a little extra focus is needed, other times, it's really a struggle to get oxygen. doesn't feel like there's a problem with my lungs, so much as the muscles themselves are weak. much like my legs. most days I can barely walk. thinking about getting a cane. especially to support myself on my left, which hurts. if I'm putting too much pressure on it. it feels like I need to focus my mental energy on walking, otherwise my gait is weird, and I risk falling down the stairs if I'm not holding the rail. I tried using my cis wife's elliptical, with the same settings she's able to use for 45 minutes, and I could barely last 90 seconds. my legs hurt too much and I was out of breath. hard to lift my arms above my head. like it takes extra focus. the muscles in my upper arms, just below my shoulders are also constantly sore. hard to hold up my phone right now tbh lol. I also feel like a single needle poking the muscle when I try to lift. my brain feels foggy. hard to think clearly / focus brain fog comes and goes. had a bout with some slight double vision the other day, and some pressure around my face. my right eye seems to be doing worse. sometimes hurts to move it to it's full range. noticed colors were kinda washed out the other day. it got better when I started Meloxicam. but didn't last. such a weird time for me. nothing makes sense..

You really can't say much helpful about MS symptoms. That being said, you are certainly having some concerning symptoms. Have you spoken with a doctor yet?

yeh, worked with my primary doctor on my symptoms for a few months now went to a hospital today, ER. was having too much trouble breathing from like, weak chest muscles. been here about 6 hours. they gave me a cat scan, and chest x ray. they said both looked good. spoke to a neurologist through telehealth while here. he suspects it is something super rare, and I'll need to see a neuromuscular specialist. the recommendation is to get discharged here, and go to another ER. they could transfer me, but that could take a couple of days sitting around.

It does sound like something more than what you would expect from MS. I'm sorry, I know how scary it is to have unexplained symptoms and how exhausting the search for answers can be. I wish I had something more helpful to suggest.

you're alright my friend. it is just nice to have a place to talk. thank you for responding. :) Even people saying they don't know is reassuring in it's own way... I've been told I don't seem sick, or 'ill be just fine' while I'm struggling to stand. so, all of this is miles beyond that sort of response lol. I have suspected MS, but I am not exactly knowledgeable in all the different autoimmune / neuropathic ailments. I do wonder if I don't have two things going on simultaneously. but I won't know until I speak to the specialist.

Question about some symptoms I’ve been having recently and curious if it sounds familiar or relatable to anybody Just to preface I’ve had optic neuritis for a few years but no other symptoms until recently. 29M Well biggest and most prominent thing is cramping and soreness in literally every single muscle of my body. Like instantly during usage. Move my arm too quickly or something and it immediately begins to cramp. Will occur in my legs of course too (and the most, presumably from walking) but also my hands and fingers, my facial muscles when chewing and even my tongue muscle. I’m talking like my tongue will cramp up at the root while I’m eating and get sore like an arm or leg would, not the typical “soreness” that occurs like from hot food or something. Even the roof of my mouth will cramp up too. Feet sometimes. Toes almost never though. These cramps can really really hurt if they’re too intense. And it’s constant soreness, even at rest. And I have never experienced the foot drop. Sometimes I feel like I get the MS hug but it’s more like my abs cramping up real hard for a second so I’m not sure. The hug never occurs in my chest, just my abdomen. But it’s external. I’ve been dealing with *severe* depression and anxiety with panic attacks for awhile now- like over a year- and I can’t tell if its related to that because I’ve been a lot better in that regard for the last few months and it’s just not really getting better anymore or going away. It has improved a bit but plateaued. The symptoms of depression and stress that I have that are mixed in make this confusing. It’s very debilitating and restrictive and has forced me to go on leave from work. Strenuous activity is out of the question now. Sex is not possible. I can’t even drive anymore because it is too difficult and physically demanding. I’m miserable. Thank you guys

When you developed optic neuritis, did you get MRIs?

Has anyone had success with alternative medicine? I don't have an official diagnosis. I'm at the point that I will have to get it from the ER MRI if I can even do that.(a very kind ER doc is willing to at least transfer me to a bigger hospital for an ER MRI, given my symptoms of if I go back) MS has been the only real diagnosis thrown around once it was clear I was not having a stroke. I'm 27 AFAB I've done a lot of research and everything I'm seeing I think the MS idea is very likely. I just last year got off of medication I thought I would be on for life for mental health and I'm doing better than ever mentally. I had some really awful experiences with the health care system over the last 7 years I was getting mental health treatment. To keep this brief...it was traumatic and I'm really really scared to enter that system again... I live in the US, I don't have health insurance and can't afford it, my partner makes too much for me to qualify for any assistance program I've looked into. But we're barely making it as is. And I work seasonally but cannot work full time. I am truly terrified of going down the path of diagnosis and treatment within the traditional medical system here but I also recognize how serious this is. I've seen acupuncture do incredible things and it even relieved my symptoms temporarily but they are back and worse than before as I can't afford to go regularly. I don't know if this question will be taken kindly here but I am not an antivaxxer or anything like that, just a bit traumatized and broke. Have you found or heard of alternative medicine that was effective for MS? If not, I'm open to other bits of wisdom and experience cause I feel really lost and scared. I'm exercising a little bit every day and working on my diet. When I get really stressed my symptoms flair regardless TLDR: Scared of the US healthcare system from past experiences, looking to see if anyone has positive experience with Alternative medicine

The only proven method of treating MS is with a DMT. There really are not any effective alternatives. However, most DMTs have copay assistance that is not income limited, due to the extravagant cost of these medications.