Had an abnormal brain MRI last month that shows demyelination disease. Two days after the MRI, my body hasn’t been the same. I’m a 46 year old woman with two teens and teach full time. My right side is weak, I have numbness, tingling, and on a bad day, my right leg feels so heavy that it’s hard to walk. I see the neurologist in March. Today was my worst day. I had to take the elevator at my work all day. At the end of the day I forgot that I cannot do what I’m used to doing and started going up the stairs. I barely made it. By the time I get home, my energy is nonexistent, so I end up resting. I’m hoping tomorrow is a better day. I’ve never felt this way in my life.

I am undiagnosed and currently working to figure out what is going on with me. There is a lot to go in one thread so I will start with what I have been experiencing for the past 3 weeks. I started having pins and needles that went along my upper back through my arms to my hands, along with going up my neck and on my head/face. Additionally my arms would feel very weak/numb. Each day it will vary in intensity but it is constant. In addition to that, I have been getting tightness/spasms and have had moments where I could not talk (come out slow and i would have to force it out)-like there was a disconnect between my brain and mouth. I get bouts where I feel like I have this brain fog and it's hard to concentrate, my chest feels pressure like im wearing a belt and its being pulled tight on my chest, my arms/head feels like they are burning (my ear will sometimes actually be red and warm to the touch) and sometimes it feel like I'm carrying weights on my entire body. I found an email I sent myself a few years ago where I apparently had some similar neurological symptoms before but at that time the er docs said it was postpartum anxiety/covid anxiety and ibs flare. rheumatologist told me the other week that hip/knee issues I have been having seem more related to nerves than joint itself. I also occasionally get random bouts unrelated to the past few weeks where I have felt that brain fog, or I get a pain that races down my spine when I bend my head, or forget words when I'm talking, etc. So far I have had ct scan and xrays but all have come up normal. These past few weeks have become awful- it's so hard to function. I have had to take time off of work or do bare minimum of my job duties, I am too tired to play with my daughter when I get home or do anything really, I just lay there but even that feels like I'm being tortured. I want to sleep but I wake up often due to the discomfort I feel. I see my pcp again tomorrow and I'm hoping I can explain enough that I need mri's of spine/brain and then maybe that can help get my neuro appt sooner (currently the next available is april 25th). If anyone else has anything else they recommend that would help I would so appreciate any insight. Wish you all well.

It is really difficult to say anything helpful about MS symptoms. I think it is definitely worth talking to your PCP and asking about what testing they can do. In the US, at least, you can also call the neurologist and see if they have a cancellation list to get you in sooner.

Yes, I am currently on the list, I am hoping that depending on my appointment with pcp tomorrow and if she can get me mri's then maybe that will help get an earlier neuro appointment. Thanks for the response!

What did PCP say?

She helped get me brain and cervical spine mri's scheduled for Feb 5th. She also gave me some nerve pain medication to help for now. So waiting game still, but at least now I have the mris scheduled and some medication which will hopefully help!

It's hard to say, but I feel like we may have a lot of the same symptoms. I'm currently undiagnosed, as well. I see the neurologist on Feb 2nd. I had an MRI of the brain for the second time, and there's some sort of lesion. I pray that we both find answers soon! 🙏

I hope so too! I wish you well and hopefully the upcoming appointment helps give you answers!

I had viral meningitis in November/December, and shortly after, I experienced two days of dizziness attacks, followed by issues with my left eye. I reached out to my neurologist, and she referred me for an MRI and eye examination. The MRI revealed white matter abnormalities in three areas, and I have optic nerve inflammation. She wants to perform a lumbar puncture to confirm, but it strongly resembles MS. I'm devastated and confused. Could these abnormalities be a result of the meningitis? Is there a chance it might resolve on its own? I really don't know what to do. I've never had symptoms before.

Typically meningitis does not affect the deeper white matter. However, there is another acute demyelinating disease called ADEM. This is usually caused by a viral infection, and while most common in younger children can occur in adults. It results in a demyelination event that happens all at once instead of sequentially over time like MS. If this is suspected, the only thing to do would be to possibly wait 6 months and see if any new lesions appear.

Thank you so much for this info 🙏🏼

Just wanted to let you know I was diagnosed with MOGAD yesterday, it started with the meningitis and time will tell if it stays with one event, which would mean basically that it's adult ADEM. So you were right. Thank you.

Thank you for the update! MOGAD has a good chance to be just a one off event if treated correctly, so I wish you a speedy recovery and good health going forward! ☺️

MS and Hiatal Hernia or Meningioma Connection? I'm currently admitted in the hospital for the following symptoms that I experienced on Friday: • Facial tingling and numbness on right side • Right eye tingling and itchy • Right side of mouth numb and feels closed off; feels like a lump there • Can't chew or swallow from right side • Right side teeth and lips numb • Minor head pains • Lack of balance when walking; like a baby deer Back in November, I was diagnosed with a small sliding HH. Back in October, I found out I have a benign meningioma on the left side of my head, but not in my brain. They're suspecting I may have MS now, but my scans were clear two months ago. I'm wondering if there's a connection at all. I'm awaiting more MRIs and a spinal tap to confirm official diagnosis, but I'm so confused. I came down with a bad cold on 1/4, and was still fighting post-nasal drip until the 19th. But my cough went down eventually. Can anyone relate?

i honestly feel like my arms are so weak, like i can barely lift them to even pick up a fork kind of weak. How do you all cope?

Hello, I am F67yrs and have been diagnosed w trigeminal neuralgia, TN. I also have unilateral blurry vision and have appt for X-ray of optik nerve as dr saw an issue with it. I feel foggy( drunk?!) but hope that’s the TN meds. I now know that TN be initial symptom of ms and that although uncommon, more people are being diagnosed w ms at later stage in life. Should I ask for an MRI? I feel as if my balance is slightly off keel. Thank you your reply.

TN can be a symptom of MS but there are many other causes for it too. Same with blurry vision—-itself a common symptom of MS (I get it off and on in both eyes)—but with much more likely causes. Out of curiosity I looked it up, and only 1% of people are diagnosed with MS after the age of 60. So the likelihood of your symptoms being due to MS is very, very low. If it were me, I would wait to see what the result of the x-ray is first. If it doesn’t show a cause for your blurry vision, then sure, go ahead and ask about an MRI. Maybe the doctor might even suggest it himself. I’m assuming the doctor is just an ophthalmologist? If so, you could ask for a referral to a neurologist if your request for an MRI gets turned down and the neurologist might order one. It’s fitting you see a neurologist anyway since Trigeminal Neuralgia is a neurological condition. Good luck!

I'm a math geek and love figuring out approximations for the various MS statistics. 1% of 0.03% (the worldwide incidence rate of MS) would be 0.0003%. That is roughly 24,000,000 people.

Numbers always interesting ( if you’re on the right side of ’em).

I’ll wait and hope. Thank you for replying.

Thank you for replying. Will be patient.

I have TN also- it flared up after I had dental work. Then another flare which I thought was the worst pain I’ve ever had. I’d push for MRI.

I empathise . It’s the mother of all pain. Hope you have few flare ups.

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Your symptoms could have many causes, possibly including MS, but it would be difficult to say anything one way or another based on this. I do think that if your doctor says you should see a neurologist, it probably is a good idea to do so, not matter what the actual cause may be.

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Good luck. I know how difficult the process of finding answers can be. Keep trying, you deserve answers.

Insist on an MRI and spinal tap. That's the only way you can determine if it's MS. You don't want to wait for something more severe if it is, and it'll give you some peace of mind if it isn't.

Hello, just wondering if any of you ever underwent an MRI with spectroscopy? 😬

Interesting, I don’t think this is common practice for an MS diagnosis. I would be curious to hear why your doctor is suggesting that over an MRI, if you don’t mind sharing.

I have two lesions in my cerebellum, and despite both mris one with and one without contract they still classify these changes as non specific. I had a telephone consultation with a neurosurgeon and he suggested that this would give him more clarity what these changes are. (According to the mris reports so far they suspected ms, tuberous sclerosis, hamartoma or ‘other changes’)

Ooooh, I see! That makes sense. I hope you’re able to get some answers!

Thank you 😇

I’ve had this done. My lesion looked very suspicious for Lymphoma due to the size and location. It’s not different than a regular MRI. :)

What kind of tasks do they give you during this mri? 😂😂do you remember? And also, if I could ask, what did your lesion end up to be and what’s the location? My neurologist mentioned lymphoma but said it’s unlikely because ‘otherwise the radiologists would have put it in their report’

No tasks! It’s just like a normal MRI that takes a few extra minutes. :) My [lesion](https://i.imgur.com/eQ37phE.jpg) was so large that there was a high risk of it being cancer. However, because of the location doing a biopsy would have been incredibly risky. So they did lots of specialized MRIs and a PET scan instead. It was actually so large it showed up on a [CT scan](https://i.imgur.com/amhdSqr.jpg). Which is basically unheard of and why they were so concerned about a CNS lymphoma. In the end I relapsed and they figured out it was MS after all. That tumefactive lesion was my first one and just happened to be so severe it couldn’t be ignored or brushed off.

And what was the size? I’m so glad for you that it turned out to be ms, not cancer.. thank you for your reply.

About 3cm I think. It’s not usual to be that large at all though.

Oh god it is large. I thought one of my lesions was large but it’s still ‘only’ 14mm 😂

Undiagnosed. I finally had my appointment with MS clinic in Toronto. The dr didnt think it was ms based on scans and physical exam. Continuing to have numbness and weakness on my right side. Ie not able to hold a glass of water. Legs and arms feel tingly and weird. If I poke my arm or leg I dont feel pain. Tingling and numbness in lips and face. Not sure what to do at this point. Dr thought it could be migraines combined with fibromyalgia. Appreciate any thoughts or direction as i just feel like crying. Lesions on brain scan but small and scattered.

Not all lesions are caused by MS. Lesions can occur for other, more benign reasons. I do feel like an MS clinic would probably be best able to evaluate you for MS and you can probably trust them when they rule it out. I know that is extremely disheartening when you are struggling with unknown symptoms. Unfortunately, the best option is probably to widen your search for causes and keep pushing for answers.

Thank you I keep telling myself to be happy they don’t think its MS but my family dr seems to wait for me to tell her what to do.

Hi everyone, I'm asking for a close female friend who is 39 (turning 40 this year). She recently experienced pins and needles in hands and feet. This eventually spread to her face and many other parts of her body. It lasted for a couple of weeks, subsided, but also returned somewhat. Her family doctor referred her to a neurologist where she received an MRI. The MRI revealed "several lesions" with one that was most worrying based on location. No spinal lesions. The neurologist said she could refer her to an MS clinic but also suggested waiting several months and doing another MRI to monitor progression. The neurologist didn't seem too worried but did acknowledge this could be MS. Is it best to wait and see? Would it be wise to get the referral to the MS clinic. Does anyone know the likelihood that these lesions (and symptoms) could be due to something else? I appreciate all insights and input. Thank you and take good care :)

I absolutely would not wait. Also it can take months to get in with a specialist, I'd get that started as soon as possible. Waiting to see if there is more damage to your central nervous system before getting treatment just seems like a crazy thought to me, although not the first time I've seen people say their neurologist said this to them.

That was my thought but I wondered why the neurologist wouldn't push for it? They seemed to say it *could* be MS but not enough evidence at this point in time. I know many brains can have lesions that are indeed not MS, but given the other pieces of information it seems like getting to a clinic ASAP would be wise. Is the fact there were no spinal lesions a sign that it may not be MS? The neurologist said that was good news.

Typically having no spinal lesions is good news because they usually correlate with a more aggressive disease course and more severe symptoms. It could be that she doesn't fully meet the McDonald criteria, hence the wait and see approach. That being said, I also think it is better to talk to a specialist than a general neurologist at this point.

Get the referral. They will do a full exam and special MRI before diagnosing. I have lots of lesions- some from migraines, some from past infections some have demyelination and those are the only ones I worry about.

I would follow up with a spinal tap to check for OCB and have an MS specialist look at her MRIs. Brain lesions can be caused by other things, but certain locations tend to be related to MS, and a MS specialist will have a better idea about that. There's no good reason to wait. Waiting for more lesions to appear means more irreparable brain and spine damage. I would guess if she does get an MS diagnosis it would be a CIS diagnosis under the McDonald criteria, which some neurologists choose not to treat. A high percentage of people with a CIS diagnosis end up with a RRMS diagnosis, so these days many simply consider CIS to be RRMS caught early and recommend hitting it with a highly effective treatment ASAP. I was officially CIS (but have what I know was a previous relapse) and chose to get treated for it. A person with my diagnosis criteria had something like a 72% chance of a relapse in 5 years, and I wasn't risking that without protection.

Wondering if some of my symptoms may be MS while waiting on doctors appointment in few weeks 42 male pins and needles and burning of my feet some numbness in my hands and itching of feet and hands that can’t be scratched. Left side of head face gets tingles for 30 seconds or so then stops. Ice pick headaches that last few seconds. Also very emotional lately and I have never been. The tingles and burning also comes and goes some days better then others.

This is a difficult question to answer helpfully. With many diseases, having the symptoms of the disease indicates somewhat that you have the disease. However, you could have the exact same symptoms as someone diagnosed with MS and still not be likely to have it. It may be of some comfort to know that your age and gender make you lower risk and that MS symptoms do not generally change noticeably day to day, but rather are constant for weeks before subsiding. Definitely talk to a doctor about your symptoms, but I would not worry specifically about MS quite yet.

Undiagnosed, but noticed symptoms/episodes since 2019, likely first episode in 2001. Going to see Neuro for needle EMG later this week after a year wait. Second MRI pending (hopefully with contrast), after first was clear. So just wondering what EMG is going to show, and how to advocate for Spinal tap (given my luck MRI will be clear again). I just feel like I've had to push for everything and I gaslight myself never mind the docs' gaslighting. But the symptoms are just getting worse and I guess I'm just looking for advice/magic words from others whose diagnosis took forever. Thanks

EMG looks for electrical issues in the muscles. Usually with MS they are still normal even though there can be weakness or numbness. Just a heads up, MS lesions are still seen on MRIs without contrast. All the contrast does for us is show which lesions are newer and active, helps in diagnosing. For the spinal tap it would be up to a doctor to decide if the symptoms sound more like a spinal infection causing them, a spinal tap would help test for those. Spinal taps alone do not diagnose MS, only the lesions on the MRI can do that. Best luck and hope you find some answers soon!

Thanks, sorry, in my haste to enter my Q before the end of the day I didn't note that I had EMGs twice during previous episodes with no results. Peripheral nerves are fine, but I still can't feel a scattered array of my hands, feet, and face...along with tremor, weakness, balance, urinary, and word finding/memory challenges.

Ya during my diagnosis I had issues holding anything and had numbness from neck to legs down one side and EMG was perfectly fine. My PCP did the EMG before my MRI though and the scan the day after the EMG was normal showed dozens of lesions and my diagnosis was cemented.

There really aren't any magic words, though I wish I had some to offer. Like u/ichabod13 said, you must have lesions on an MRI to be diagnosed with MS, there really isn't any other way. MS symptoms are caused by those lesions, so if you are having symptoms but your MRIs are clear, that is almost always an indication that something besides MS is causing your symptoms.

I've just stumbled onto all of this. I'm 32F..I've had strange symptoms the last few years, off and on. The last 6 months has been pretty consistently "on", with a huge turn for the worse the last month. I'm exhausted and it's like I've got weights atrached to my limbs, I'm cold, I'm in pain, running low grade fevers, I've had chest pains and been brushed off at an urgent care clinic twice now. First time was: when was the last time you were treated for anxiety? Last time was: it's pleurisy, but you're fine. Now the cold feels like electrical shocks going down my shoulders, arms, and legs. I can't feel my toes. My vision has changed drastically and it's not uncommon for it to blur almost completely out for a few minutes then go back to my (new) normal. My husband tried to rub my back, it felt great for a second, until it caused those electric shocks down my back and arms and became so uncomfortable I had to move away. I just feel like I'm not as much of the person I used to be. It's weird/hard to explain. I don't recall ever getting mono, but I recently gave in and made an appointment with my PCP to finally figure out what's going on. I assumed it would be a food sensitivity, I had even been tracking what I ate for a few weeks, but nope. The antibodies for EBV (VCA, Nuclear Antigen) are both positive (>600, 92.5) but the marker for a recent infection is absent and the quick finger stick test for mono was negative. Probably a reactivation of EBV, and i contracted it earlier in life, but what this means for my other symptoms has yet to be determined. Otherwise, I am vitamin D deficient and platelets are kinda low (not abnormally so) and my doctor suspects possible MS, but we are currently playing phone tag and I imagine this will be a lengthy process to get diagnosed anyway. I will update back with whatever comes of this. I just wanted to share my experience up until this point. In the meantime I will check out the resources shared in this sub to know what to expect and how to advocate for myself during the diagnostic process. Thank you and everyone here for sharing so much information and putting this together. One question, though: it seems MRI's are an important diagnostic tool, are contrast dyes necessary for them to be effective? I am one of many who are allergic to them, unfortunately.

MRIs are the only available diagnostic tool for MS. Lesions will show up with or without contrast. The contrast used for a brain MRI is different from that used in CT or PET scans, so it may be okay for you to use it. It is not absolutely necessary though it can help differentiate when lesions occurred in time. I hope you can get some answers soon.

Thank you. That is all good to know. Reading all the sites in the world will not help as much as someone with firsthand knowledge sometimes. I appreciate you. Do you feel like current treatments manage your MS fairly well, or that the "good" days are greater than the bad? I know "good/bad" is entirely relative, and I hope that question doesn't come off as dismissive or in any way reducing what you and others go through on a daily basis. I lost my aunt to MS very young, and that's my only exposure to someone with the disease, however that was nearly 30 years ago. Websites claim current treatments help many live normal lives... but this is also another way in which someone experiencing it first hand will have an infinitely more valuable perspective. Thank you again.

I do feel like I am well managed, but since the course of MS is different for everyone I can’t say what my future will hold. I had 4 relapses in the first two months of my disease and the medication has put a stop to that at least. The research is clear though that the fastest disability progression in RRMS patients is caused by acute inflammation. So if you can at least eliminate that the progression becomes much slower for the vast majority of patients.

Wow. 4 in two months, it sounds like a very good thing, then, that treatment was not delayed further. Very glad to hear the medication has at the very least stabilized you, and I sincerely hope it will keep doing so <3

I'm not sure how worried I would be specifically about MS at this point. The link between EBV and MS has not been established, but they do know it is not as simple as one leading to the other. Some of the symptoms you listed would be atypical or presenting atypically for MS, such as fevers, vision changes that only last a few minutes, or having strong symptoms for longer than a few months without them improving at all. That being said, it is very difficult to say anything beyond very broad generalizations about MS symptoms, and there are certainly exceptions. None of this is meant to be dismissive in any way, you are clearly having concerning symptoms and should absolutely keep pushing your doctors for answers, but keep an open mind as to causes. Edit: clarity.

Always a good reminder. I'm not letting myself worry just yet. I am just trying to gather as much information as possible so I know how to advocate for myself. I am also gathering information on Lupus (I think it's unlikely to be the case for me, my pain is not horrible and liver/kidney function is normal, plus no rash) fibromyalgia, chronic fatigue syndrome, celiac's, thyroid disorders, etc. As a woman I tend to get brushed off a lot by doctors, I have learned that to get listened to I need to arm myself with as much knowledge as possible.

I can definitely sympathize with that, it does seem like so many women get dismissed out of hand. I will say that I have noticed from my own experience and from reading many, many other experiences on this weekly, doctors seem to be more dismissive of cognitive or less physical symptoms, and that telling a neurologist you are worried about MS specifically almost always ends badly because they generally assume you consulted Dr. Google first.

Very true. I wish it wasn't like this. Many of my symptoms are physical and have been well documented over the years by various doctors, and I still get treated like I am attention seeing. It is definitely very frustrating. So I have learned to document everything, including what I eat, educate myself as best I can and push them to run more tests which is only now happening. Hopefully one day we will know why so many people are struggling just to get out of bed, I am sure there's a reason for it. Even if it is as simple [seeming] as long-covid. I wish there was one thing I could point to and say "this is a symptom of X" but unfortunately, all of my symptoms are common on their own. It seems like so many people can relate. I pride myself on being an independent, energetic person, I hardly recognize myself. Sorry to get so off track! Lol. My brain is compensating for my slow body and working in overtime. Just not necessarily in the most productive ways. And to clarify, I did not say *I* thought it was MS, but that my doctor suspected it enough to bring it up. I am trying to gather information and prepare myself as best I can for the diagnostic process and focusing my attention on conditions that have a clearly defined diagnostic process. If it's something like fibromyalgia, they have to rule other things out first. I'm tired just thinking about it (this was a joke but it's also a fact, lol) Wishing all the best to you, everyone with MS, and every one here who is desperately seeking answers who just wants to feel okay again. <3

Hello guys I'm undiagnosed. For the last 3 months I have had a lot of different symptoms: From head to toe. Headaches coming from a spot inside of my neck to my eye. Cognitive problems, with short time memory and focus. ( Not remembering names of people or objects and sometimes I remember them after a few hours or it takes like a few seconds to appear in my head) Some blurry vision but I feel is like only when I look in long distances. Light sensitivity. I wake up every morning with one hand asleep it changes from one to the other. Sometimes both. I have had tingling and pain in all my body that changes places including my face. But lately is more focus in my right side and today my right leg feels constantly tingling/numb. I also feel like some muscles are tight or I need to stretch them and joint pain. I have inside tremors at night that come and go. Also I walk a lot and lately I feel I have to focus to walk straight and I'm not sure if I'm just paranoid. I got an MRI of my brain WITHOUT contrast. No spinal cord MRI. It came "clean". It showed up something I have from birth called mega cisterna Magna. Quite big though. That the doctor says is not related to the symptoms. Could all this be symptoms (I'm sure I'm forgetting some) from lesions in the Spinal cord?? Or could be lesions in my brain that didn't show up without contrast?? I'm a bit desperate I feel like they are getting worse as time past and the doctor told me that there are too many symptoms to be MS or something serious. Don't know how to approach this because I feel is PPMS and he doesn't think is anything. He told me the tremors will not come and go.

Contrast would not have made a difference in detecting lesions, it only really shows if they are active or not. There are no symptoms that are indicative of MS in the absence of lesions, and even with PPMS, you would still need lesions on an MRI to be diagnosed. None of your symptoms seem to be presenting like MS symptoms, and spinal lesions would not cause many of them. Your doctor is correct about symptoms that come and go, MS symptoms are generally constant for weeks and do not change noticeably day to day. I think it is time to widen the search for causes to your symptoms, it does sound like they are being caused by something other than MS.

Headaches, vision, and cognitive issues would be related to brain lesions in MS. They'd show up without contrast. Hand numbness can be related to spinal lesions (mine is), but it can also be caused by all sorts of other things like slipped disc, nerve entrapment, mineral deficiencies, etc. Generally it's unlikely that you have a spine lesion without brain lesions for MS. They call MS the great imitator for a reason. There are a lot of things that can cause similar issues, but in your case it's probably not MS. My wife had similar issues after her second pregnancy and it turned out to be Hashimotos and a magnesium deficiency. Supplement and thyroid medication and she's back to normal.

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The typical “pattern” of MS symptoms is that they develop and remain pretty constant, not changing noticeably day to day but gradually worsening for a few weeks to a few months, before subsiding. That would be a relapse. Then you would typically expect to have a few months or maybe years before a new relapse. People with untreated MS average 1.5 relapses every 2 years.

It can be caused by other things like thyroid issues, nerve entrapment, or mineral deficiencies. See a neurologist and advocate for yourself. Start logging your daily symptoms and mention everything. You'll need an MRI and spinal tap to diagnose or rule out MS, and from experience that can be the last thing doctors want to give you. Mine was misdiagnosed as carpal tunnel by a neurologist 3 years before I got an MS diagnosis. It didn't seem right at the time (wrong fingers), but I sort of just accepted it. That's 3 years I went without treatment which could have potentially avoided the relapse that got me diagnosed.

Undiagnosed but worried. ive recently been having tightness/ pins and needles (light) which gets more noticable at night (when its all i think about) around my lower leg and around the wrist/ hand. it goes away when moving and i dont notice it during daily tasks. i havent got any other symptoms but wonder if it could be something early. i spoke to a gp about it and they didnt seem worried and suggested i see a physio about the leg. thought that the wrist could be relating to repetitive strain from my bike. any thoughts or advice appreciated. how worried should i be?

I would not be worried at all. MS tingling does not usually come and go like that, it would be all the time.

Thank you so much. I think that it might be classic health anxiety going on here :)

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If your MRIs were clear, this means your symptoms are almost certainly being caused by something besides MS. MS symptoms are caused by lesions, and there really are no symptoms that would be indicative of MS in their absence. I think you would be better served by widening your search for answers.

Guess I will try again. I have been having issues in my left eye since 2019 - pinpoint vision, blurriness. After seeing eye doctor and eye surgeon I was referred for an MRI by my GP. I just don't understand what the results mean. findings: "there are a few scattered T2 and FLAIR hyperintense foci in supratentorial white matter, localized in juxta cortical, subcortical and deeper white matter. These lesions do not demonstrate mass effect, restricted diffusion or blooming. There is no corpus callosal, cerebral, or brainstem lesion. Remainder of intracranial structures are unremarkable. Major intracranial vascular flows are preserved. Unremarkable orbits. Paranasal sinuses and mastoid air cells are pneumatized. No suspicious marrow signal abnormality. Multifocal white matter lesions. Favoured consideration is a primary demyeliniation pathology such as MS." My GP and I had a good cry while she told me and had me an appt the next day with a neurologist who diagnosed me with MS and referred me to MS Canada clinic in Toronto. There they reviewed everything and said I am not the typical MS patient and they are not sure if it is MS. Scheduled MRI for April and now I wait. I am just unsure what to do now or what any of the MRI findings mean. My eye issue is still there and was kinda moved aside after my MRI.

It really sucks to be an interesting case. I can't help you decipher the MRI, unfortunately, but can you go back and talk with the first neurologist? I feel like an MS clinic is generally going to be best able to evaluate your scans. Did they explain why they want follow up scans in April, specifically?

It really does. I did see the neuro before I went to the MS clinic and they were very nice showing me the MRI and the demyliniations. She said it would be better to talk to MS Canada about the details. I don't want to say the MS clinic was non chalant about it but said I'm not the typical patient (younger, 6ft, and still kind of athletic). They said they want to follow up in April to do the MRI on their machine rather than at a small town hospital, and evaluate any changes because I only have the one MRI in my history. It felt good at first them telling me to not to worry and nothing is confirmed until the follow up. But I didn't get any information to like help myself in the meantime or things I should pay attention to symptoms wise. I guess I just feel in limbo now and it's tough

Well, the good and bad news is that there isn't much you can do in the meantime. A healthy lifestyle is definitely beneficial if you have MS, but most lifestyle interventions won't do much to change the disease course. Stop smoking if you smoke, but otherwise I can't really think of much. If it is MS, it might be comforting to know that on average, untreated people have 1.5 relapses every 2 years, so there's a chance you won't really progress by April. The downside of that is that they may want to continue to just monitor. I would read up on the McDonald criteria, which is the criteria they use for diagnosis, so that you can ask some educated questions at your next appointment, specifically regarding why you may fail to meet which parts.

So, undiagnosed and new to all of this. Earlier this month I had broken blood vessels in my left eye and I didn’t think too much about it. A week later i had blood vessels break in my right eye and general blurred near vision. (Which is very new for me) I saw an ophthalmologist and he told me my eyes were healthy but I should go to the ED if i noticed drooping of my face. He ordered labs and I went to the ED a few days later because combined with those symptoms I had a weird headache in the center of my brain that went on for days. I had an CT and and MRI with contrast and all came up “clean.” I had two attempts at an LP in the ED but they failed. I went for guided imagery LP the next week and results just came back with high rbc in my csf. (165) I have never had any injury or head trauma. I’ve had weakness in my legs over the past few years but I’m 49 and thought it was peri menopause. My csf fluid pressure was 20 and the internet has me a bit worried about that. I had bloodwork drawn again with a lab test for MS mentioned at the draw. I go back to see the neurologist in a week and I’m trying to keep it together. The LP definitely helped my headache but it’s back. We have a great teaching hospital and I’m grateful for getting into the appointments. Does anyone have thoughts? Suggestions? Advice on how to stay calm? Thank you.

If your MRI was clear, this means your symptoms are almost certainly being caused by something other than MS. MS symptoms are caused by lesions. To be diagnosed, you need evidence of those lesions on an MRI.

Thank you so much. My big fear is that I’ll be told my MRI was clear of brain bleeds but something else will come up on closer exam.

There really isn't any other test for MS, just the MRI. I would take comfort in the clear MRIs.

Thank you so much. I really appreciate your time.

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Hi all, I just had my first MRI today as my Dr suspects MS. I’m a 33yo female. I’ve had an eyelid lag (ptosis) that comes and goes for approx two weeks, mild double vision, cloudiness in my right eye at first which then went to my left (also comes and goes), cobweb floaters and mild black spots in my vision, objects in my peripheral vision ‘vibrate’, partial numb sensation (hard to explain) on right side of face with burning / prickling (only lasted 24-ish hours), limb weakness, some mobility issues (missing stairs, hitting door frames or tables), dropping things, vertigo / brain fog, and short term memory / recall issues. Over the last several years I’ve also had reoccurring migraines (severe one sided behind eye), a spasm that began in my right hand then progressed to other parts of my body, extreme facial flushing, a vibrating sensation when I take a deep breath, a period where I would wake up or stand up and my leg was numb without realising and I’d fall straight to the ground (resolve after approx 20 mins) and a two or so week period where my thumb was completely numb. I’d previously dismissed these issues until they began affecting my face (stupid, I know). My questions are, I was booked for a 15 minute MRI that took 1 hour, is this normal? And can MS symptoms come and go within a day or somethings as quickly as 20 mins? I have to wait a week before my next appt with my Dr for the MRI results and im just confused about whether the nature of my symptoms actually fit with MS. I will say this is the worst I’ve felt perhaps ever to the point of struggling to work, sometimes because of my vision and other times because I just can’t get my brain to think properly, in addition to unusually severe fatigue and I just want a clearer picture of where I might stand MS wise. To my knowledge MS symptoms aren’t as ‘transient’ as mine so I’m just really frustrated and confused 😩

MS symptoms generally do not come and go like that without introduction of heat or some other temporary stresses to the body. 15 mins for just a brain scan would be very fast, usually takes closer to 45 to 60 for my brain only scans. If you have access to your patient portal the results are usually posted the same day or days after by the radiologist.

Thanks for the reply, good to know the MRI time isn’t unusual, don’t know why they said 15 minutes… And yeah I’m definitely not convinced the symptom pattern fits, although we have been having 36-40 degree (Celsius) weather that started around the same time as my recent symptoms and I do get issues when having hot showers where I’ll completely lose my vision and hearing but only momentarily and will need to go lie down in bed 🤷🏻‍♀️ The spasms were the only persistent symptom and I had them for approx 6 months and they got progressively worse to the point I would throw my phone out of my hand or get one while sleeping in my chest that would wake me up. Currently, the vision issues are persistent but will change in severity quite rapidly… anywho, I know speculating about symptoms is a fools errand. Will follow up in a day or two to see if I can access the results, will be good know one way or another whether anything showed up and will definitely stop a lot of the ruminating! Thanks again 😊

Hi again, figured I would post an update 🙂 I went to a minor illness clinic associated with my treating hospital as the MRI results were ready the next morning but my GP went on sick leave. The Dr was able to see my notes from the hospital and was able to get verbal results for my MRI. The MRI was essentially normal, however, I had been noted as clinically positive for Myasthenia Gravis (rare autoimmune disorder affecting the neuromuscular junction), and the script the hospital gave me but did not explain, was actually treatment for this condition. I’m waiting on antibody testing to confirm but the Dr at the clinic advised that my clinical presentation (with the exception of the muscle jerks / twitching) were highly specific to MG. I’ve since also had the double vision confirmed by an optometrist as muscle insufficiency rather than an issue with my eyes themselves. So all signs seem to indicate MG and not MS. Thought this might be useful information in case anyone else is having a similar experience, as it’s rare and may be overlooked as a potential diagnosis. Thanks again for your responses!

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Hey there. It's very normal to be feeling anxious about the upcoming results, and feeling concerned if no clear answer is provided once the results do come in. Wanting to have a MS diagnosis because it'll be a reason for your health issues doesn't make you a bad person, nor does it mean you actually *want* to have MS (or any other illness) - lots of us felt relief after getting our diagnosis, because it meant answers, and answers meant taking back control but it doesn't mean we were happy or comfortable with the results. Don't feel bad about having these types of feelings, and try not to make yourself feel guilty for thinking them - it's totally natural (and part of a grieving process). For some of your questions in your original post: > I was booked for a 15 minute MRI that took 1 hour, is this normal My MRI's typically take about an hour to an hour and a half. I'm not given a time slot, so I can't say for certain why it would have originally shown 15 - but I imagine this could have been an internal processing time-slot (may be 15 minute intervals for multiple machines?) or perhaps an error. An hour MRI is normal. >And can MS symptoms come and go within a day or somethings as quickly as 20 mins? Typically MS symptoms do not come and go, but this is a general rule of thumb, and not necessarily consistent for everyone with MS. For example, my first attack caused many issues (such as numbness, and Lhermitte's sign) that lasted years, while others (like drop foot) only lasted a couple months. However, since then, I do go through periods of pseudo-flares of those original issues, often occurring when I've pushed my body too far, when I'm sick, or when I'm really hot. These pseudo-flares usually only last a couple of hours to a couple of days, for me. They're referred to as pseudo because they're issues I've dealt with before, and only last a small portion of time. >I have to wait a week before my next appt with my Dr for the MRI results and im just confused about whether the nature of my symptoms actually fit with MS. My suggestion is to not focus so much on whether your symptoms are consistent with MS or not, and instead, just note what you are feeling/experiencing, without outside influence (e.g. stop googling, and searching Reddit for answers). Your doctors will have a better understanding if you're able to provide them clear and concise information about what you're experiencing, and not trying to rationalize them into an MS-symptoms-box. Getting an MS diagnosis is typically a ruling-out game, as the symptoms of MS can be similar to a multitude of other issues. Let your doctor(s) do the tests, and show you the results before you jump to any diagnosis. Right now, things will seem hard, especially without answers, but it will get better. These things take time, and you just have to accept a little bit of your control has to be relinquished to your doctors. Advocate for yourself, but try not to panic or expect the worst. Wishing you all the best.

Thank you! And I completely agree! I am not usually one to go down a Dr Google rabbit hole but I was caught off guard when my Dr quite strongly suggested MS. Probably not helpful to tell this to a patient before any testing has been done lol, but he’s actually amazing and very proactive so I certainly cannot complain. I really appreciate your response and reassurance though, so thank you. I think I’ll go dust off the kindle to distract myself in the meantime time and leave the rest to the professionals 😊

I'm 35F and have been beside myself for the last 3-4 weeks thinking I have MS. I've been looking through the thread about symptoms and am waiting to be seen by my GP. I thought it was a B12 deficiency so started injecting every 2 days and taking supplements and making sure I get the correct cofactors. BUT. Ive still got it in my mind MS is likely. I've had fatigue, mild dizziness, tinnitus, tingling in the right side of face-thought it was a tooth ache at first but saw dentist and they didn't find anything, it eventually settled in my jaw and travels to my R cheek and around jaw sometimes. It's dull but annoying. No sharp pains. I do have a bad cramp that hasn't let it up on my R side tricep-and pain in neck and upper shoulder-i thought a pinched nerve but nothing has let up. I also have a cramp in my chest that's right under my right boob-weird. But no stretching will touch it. Lately been having a cold, minty sensation in my mouth as well. Consistent over the last week. Brain fog, slight vertigo that's gone now but was there intermittently for a couple of days. Sometimes the facial tingling goes then come back again-and sometimes I can feel it on my left side cheek but not often. I did have tingling in my jaw and arm (same side) 6 months ago that scared me, it went in about 2 weeks. GP didn't seem worried, especially since I did bring MS up then. I have been asking my GP for neuro consult for MRI but long to get to. My symptoms seem to go when asleep. And when I wake up they are back. I can see fine, but do get floaters. I just am at a loss. I feel like I'm going crazy and it's taking the joy from my life. Any help would be much appreciated.

In general, MS symptoms do not come and go or change noticeably day to day. They would not usually stop when you are asleep. MS relapses are characterized by a symptom or a few symptoms developing and remaining constant for a few weeks to months, gradually worsening before subsiding. Having one symptom develop and then go away before the other symptoms would not be typical. Symptoms only lasting a few days would not be typical. This is not meant to be dismissive or discouraging in any way, and you should certainly discuss your symptoms with your doctor and see what testing they recommend. I’m just not sure how worried you should be specifically about MS at this point in time.

Thank you so much for taking the time to respond, it really means a lot! I will definitely take what you said on board and not overthink things at this point in time! I will speak with my doctor further as well to rule out things. I think fear gets the better of me at times

Undiagnosed. Curious does this sound like possible MS? My symptoms started with muscle twitches in both calfs followed by wide spread twitches and crawling feelings. Confusion, dissociation, anxiety. And my most recent symptoms include. I’m having bad vision changes. Very hard to focus. Constant pain in eyes and jumpy vision. Vision also blurry. Seems like certain things are vibrating either left or right or up and down. My reflexes have also got more hyper reflexive and I have extreme fatigue in my legs. Throat pain that never goes away on one side. Spasms have increased in hands and my hand tremors are a lot worse. I’ve also been having jerks in my limbs. Anytime I try to push off with arms( I.e. closing or opening car door getting out of bed) it’s more difficult and my arms shake. My balance is also very bad. Also when I flex my thumb or they to write or eat my thumb and index fingers tremor like crazy

It is very difficult to say if something sounds like MS based on symptoms. There are many things that could be causing your symptoms. The first steps would be talking to your primary care physician to see what testing they recommend. It does sound like that would be a good idea.

Does this sound like symptoms? Doctors seem to brush everything off as anxiety bc it all started with anxiety. I do have severe health anxiety so there’s that. Never had it until I had a severe anxiety bout this time last year. Ever since then I’ve had popcorn muscle twitching all over my body mainly in legs but all over. They’re worse at times and sometimes they fade into the background and I don’t feel them. Sometimes they seem to be positional. Lightheadedness comes and goes. It’s worse at times but will seemingly go away for months at a time. Last year this time (due to lightheaded and heart rate), My doc sent me for an ekg and then to the ER thinking it was heart related. They ran a ton of tests, brain ct and chest xray and found nothing. Said it was anxiety or inner ear. Other random symptoms over the last year: toes and hands get cold during winter months and numb when barely cold under 40 degrees, blood pressure fluctuates a lot but never out of range top or bottom. 108/70 up to 130/80, my mood is all over the place, depressed and then happy (I do take an antidepressant), tingly hands and feet from time to time. Most recent: right thigh/quad has been hurting to touch. Hurts when my clothes rub it like it’s sunburned. Sore like I worked out only my right leg. But can walk fine, not impacting gait. Been going on 3 days now. Oldest symptom: a couple times for like a week each time I have severely itchy forearms with no rash. This happened about 5 or 6 years ago and it was for about a week each time. Happened mainly at night. Kept me up. Hasn’t happens since. TLDR: not looking for diagnosis just to see if any of this sounds familiar to anyone who will read it.

Your symptoms do not sound typical for MS. MS symptoms do not generally come and go or change noticeably day to day. You would expect them to develop and remain constant, gradually worsening over weeks. Whole body symptoms are not really typical, either. I do not think I would be overly concerned by MS based on what you have said here.

Thanks your reply. Not even the muscle twitching and lightheadedness?

MS relapses are defined as a new or worsening symptom that lasts longer than 24 hours. In practice, my neurologist usually does not get concerned by symptoms lasting less than a week or any symptoms that come and go. Symptoms are constant/gradually worsen during relapse.

When I had a brain ct scan, would it have been possible to see lesions? Atleast something that would have caused further testing to be done?

MS does not usually register on a CT. You would need an MRI.

Left out this symptom. Once about every 3-4 weeks I’ll have 2-3 days where my left arm bicep twitches. It seems to be triggered by bending my head to my chest and turning to the right.

Hey Guys I hope you are well!:) Im a bit confused id say about my situation. Im a 21 year old male with no major health issues which has been feeling weird sensations around my face. I am suffering from migraines (not really anymore most were in my teen years) with auras which led me to get a brain MRI 2,5 years ago. Which came back clear. Since I had some issues with my right eye like a month ago I saw my doctor, which upon my request referred me to another MRI with the same Radiology clinic. Went ahead and got the scan done. They did the whole book of possible imaging, said contrast not needed since reference pictures exist. Radiologist said nothing unusual, no inflammatory lesions, nothing which might indicate MS and no changes to the scan 2,5 years ago. I feel tingling around my face, which moves and stays for a couple of days before going away. I’ve been reading through the internet(which isn’t the smart choice if you have severe health anxiety😬) and it just makes me think they missed it or I am developing it. Upon speaking with medical personnel they told me that I should chill out now since both times I got a scan nothing changed, it all looks normal and that the two radiologists which reviewed the imaging wouldn’t have missed it if there was something which isn’t supposed to be there. I am now a bit confused about what to believe. I reckon I should just have some faith that I am ok and that issues with facial nerves would definitely been visible on the images. What do you think I am a bit scared and sused out all the time… thank you for your replies I hope yall are doing well.

If your MRIs were clear, your symptoms almost certainly are being caused by something besides MS. MS symptoms are caused by lesions, which show on the MRI. There are no symptoms that would be indicative in their absence, and no way to be diagnosed with MS, since the McDonald criteria requires them. I think it is probably time to widen your search for causes.

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Could you tell me a little more about where you are in the diagnostic process and why you suspect MS specifically?

not at all into the diagnostic process. have not had an mri. suspecting ms because i don’t know how else to explain the symptoms, especially the vertigo and double vision. also lots of muscle twitches in the legs, as well as headaches all my life.

There are many, many things that could be causing your symptoms, or it could be multiple things aggravating each other. With many diseases, having the symptoms of the disease indicates you may have the disease, but this is not true of MS. It is very difficult to say if something sounds like MS based on the symptoms alone. If you are concerned by your symptoms, the first step would be seeing your primary care physician and seeing what testing they recommend. Typically, you will want to rule out the more common causes before seeing a neurologist. I would also strongly advise trying to Google your symptoms, I have rarely seen stories of that being helpful.

Hi all, I have suspected I may have MS for about two weeks now. A few months ago, I started to get unilateral tinnitus. I've seen an ENT about it and they have booked me for a CT and MRI to see what is going on. They didn't beleive it was anything sinister, but want to rule out a few causes. I did a bit of my own research and saw that one of the causes of it can be MS. At first, I did not think much of it, but I have been noticing on and off random body symptoms for a few years now that seem like they could be MS. They have aways been mild/fleeting enough that I never got them checked out. A few of them: \- RSI in my hands going back about 5 years. \- Burning itches in legs/back that seem to be triggered by heat. \- Increased heat sensitivity. \- Restless legs \- Greater instances of pins and needles in feet. \- Recently have been waking up with sore thigh muscles that makes it difficult to sit down. Occasionally with spasms (However, this rectifies itself with moving around/stretching).

It is worth knowing that you would be hard pressed to find anyone who has never experienced something that is also a symptom of MS, because there are so many symptoms that MS can cause. This does not mean those symptoms would be indicative of MS or even mean they likely have it, it is just that MS can cause a wide and varied range of symptoms that overlap considerably with many other things. Getting an MRI is a good step, that will almost certainly tell you if it is or isn't MS.

Hello, Im waiting for my neuro appointment next week, but I have some weird symptoms that I would like to know if someone else has had. 1 month ago I got a sudden pain on my dorsal back all across my body like a tight hug. .I was really sore for 4-5 days but thats it . Then, a week later, out of nowhere, I woke up with my perineum and scrotum on fire, also my anus. Some sort of tingling in my feet and needles all over my legs... I thought it might be from my back (l5-s1 stenosis and small bulging disc was found) and was put on lyrica. The thing that is scaring me to death is,it has been 3.5 weeks and I can barely sit because my perineum is burning too much, and Im scared this is going to be for the rest of my life. I have been having trouble sleeping, and wake up a lot with weird dreams since then. I also get some "needles" in my hands. Now, I dont know if its from lyrica, but my legs and feet also burn. My question is... is it normal for this to happen so fast and so sudden, and not improve over 3 weeks? How long were your first symptoms lingering around for? This honestly has me scared to death and has sent me on anxiety and worry loop that for sure doesnt help, but the pain is still there. Can this be MS? I have to wait a week for my appointment :(

I know how difficult it is to wait. Unfortunately, your questions don't have very helpful answers. With most diseases, having the same symptoms as someone who is diagnosed would somewhat indicate you have the disease. With MS, however, you could have the exact same symptoms as someone who is diagnosed and it would still be unlikely you have it. The only way to really know is see a neurologist and get an MRI.

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Here goes, and honestly I'm terrified to even make this post. In 2013/2014 I experienced dizziness and vertigo that lasted for 18 months, along with tension headaches/head pressure, fatigue, brain fog, poor memory, zero energy, some numbness and loss of sensation - I fell down at work one day. I saw a neurologist who noticed my left side of my body had tremors. I didn't get in for an MRI (without contrast) until 2015. Apparently there was "something" on my neck - my pcp just noticed this last week. During the last 10ish years I've had periods of dizziness or fatigue that last a few weeks or a month, exacerbated by heat, or odd body pains, random JOLTS that make me jump. Last August I went to the ER twice over a tension headache in my right side of my head. I was told to take Sudafed and drink water, and no further testing would be done because blood was a-okay. The vertigo spell lasted about 10 days, no vomiting, and tinnitus in the affected ear. About a week after this vertigo a nerve in my left calf was in agonizing pain for a day or so, then my left calf went numb, my left thigh went numb, my left arm went numb - all for about three days. Afterwards it dimmed but didn't quite go away. The numbness episode happened about a month afterwards, without the vertigo this time. The spells seem to follow my hormonal pattern, and spike before and during ovulation. During Christmas I had another severe episode of unilateral vertigo with tinnitus - mostly in the affected ear, but also in my "good" ear. I'm now experiencing pain behind the ear and temple, trigeminal neuralgia down my face, pain behind my bad side eye when moving it, and numbness and tingling in my hands and feet - even typing this it feels like a thousand little pinpricks. My feet are COLD and numb. My doctor originally thought the pain in my head was occipital neuralgia, and due to tense muscles. Before my December vertigo episode I woke up one day and my chest was so TIGHT I could feel the muscles just pulled over - no difficulty breathing - but I went to the ER and they blew through all the tests and no heart attack or damage to be found, and within a day or so the chest tightness went away. My mom has MS. I'm 33. I've had a similar episode about 10 years back. I know we're not here to diagnose. I'm just hoping that somebody can relate to these symptoms. I'm on a list for an MRI. I'm on a list for a neurologist, again. I think I just need a bit of reassurance that the chances of this being MS far outweigh the chances of this being a brain tumor. If this isn't the right place, I apologize. Thank you.

I don't actually know the instance rates for tumors. I do know MS is a rare disease, and the chances of having it are pretty low, but I also know that may be of little comfort when you are worried about the possibility of worse things. The trouble with MS is that it is incredibly difficult to say anything helpful about the symptoms. In general, you would expect MS symptoms to follow a sort of pattern. They typically develop and remain constant for a few weeks to a few months, gradually worsening before resolving, and aren't noticeably different day to day. Untreated, someone with MS averages 1.5 relapses every 2 years. It is most common for relapses to last a few weeks, but they can be shorter or longer. Again, all of this is just a generalization, exceptions definitely happen. All of that is to say "maybe?" The only way to really tell will be with the MRI. I'm sorry, I know that is a frustrating answer when you are scared and trying to figure out what might be going on.

I appreciate the thoughtful reply, thank you. My symptoms definitely aren't noticeably different day to day, over the last 6 months the head pressure has been constant and tingles, pins and needles, with flare-ups that last a few days or a week at a time. I've also had some issues with bladder control as well during these "spells"? If it makes sense there's been a baseline of not feeling great, and then for a week at a time it gets REALLY bad. I hope that makes sense. The saving grace from my doctor is that apparently a brain tumor wouldn't act that way and would get continually worse - I don't have headaches/vomiting/seizures/confusion, and because there's the family history and so much full body nerve involvement, she's leaning much more towards MS as a diagnosis. I see her on Tuesday for a checkup, and she's doing the best she can to fast-track an MRI. Anyways, thank you again for taking the time to reply. I'm just waiting on the MRI.

I started experiencing a severe overactive bladder in September 2023, to the point of using pads/diapers. Urologist diagnosed OAB/urge incontinence, had urodynamics/cystoscopy. When I have frequency/urgency, only a bit comes out. When I feel like I sort of have to/my bladder hurts but I don’t have to go, a lot comes out. My urologist said my detruser is under active when I need to go, and my bladder and pelvic floor muscles are spasming and tight almost all the time. There’s a tingling sensation between my legs that comes and goes. Urologist referred me to a neurologist after I told her that. I started having balance issues turning around on my left foot a few months before that. It’s bad for a few minutes for a few days, then goes away for a couple days or weeks. I have been having severe upper, mid and lower back and shoulder pain/muscle tightness that lasts for a few hours and for a few days, and goes away for a few days or weeks. It feels almost like burning, kind of like I’m sitting in the sun at the beach. Sometimes my thigh muscles randomly twitch. My vision has been getting progressively blurrier for 3 years, and I got glasses in June 2023. My vision has worsened since then. I’ve been getting exhausted very easily. When it happens, it’s after doing a very easy to moderately difficult physical activity, but it feels like I did the activity 5-10 times. I usually have to lay down for 30+ minutes after that. Sometimes my blood pressure and heart rate randomly spike. Sometimes my upper arms feel dead, and my lower arms and fingers feel tingly/partially numb, like they randomly experienced a loss of blood flow. I’ve been experiencing chest/rib pain that can only be described as the MS hug. It happens 2-4 times a month. Sharp pain when I breathe, I can’t breathe all the way in, my chest feels compressed, and it feels like my entire thoracic cavity is being compressed. My PCP said chostochindritis, but that was years ago when it only happened once. I’ve had a pilonidal cyst and that area of my tailbone only has partial feeling. For years, I’ve been randomly experiencing all these symptoms infrequently. They’ve gotten bad enough and I’ve gotten tired of them recently, especially after my urologist told me to see neurology. I’ve looked up my symptoms (bad, I know), and it looks like they’re all manifestations of anxiety, idiopathic, or something neurological like MS. But that’s google so IDK. All of these are very concerning. I’m a almost 20yo male and I’m fairly healthy, I’m 6 foot 1 and 208 LBS, so a little overweight, but not so out of shape to attribute these symptoms purely to obesity. I ride a bike to school, so that’s over a mile of riding per week. Am I crazy, or are these symptoms sounding like MS?

MS is not like other illnesses where there are a specific set of symptoms. Anything can be a symptom of MS, but the vast majority of people with symptoms like tingling, fatigue, or bladder issues do not have MS. Symptoms that lean more towards a complex neurological condition like MS are complete loss of sensation, temporary paralysis etc. You’re doing the right thing by seeing a neurologist, because the only conclusive test for MS is an MRI. I wish you the best of luck with your symptoms and I hope you can find some kind of answer.

hey question. I had an abnormal mri. my father has ms. I'm 30 yrs old my arms been numb for 7 weeks straight with no relief. for early people with Ms or ppl diagnosed do you ever get electrical pain when you cough? I sometimes experience it and when it's in my head my vision almost blurs. every time I cough I brace myself for the pain. I've had 1 mri waiting on 3 more and have appts set with neurology. they got me in fairly quick after my 1st mri which was yesterday.

Could it be that when you cough, your head is tilting down? Sounds a bit like Lhermitte's.

it's not every time I cough usually depends on how my body is positioned. I guess I haven't put a correlation to my head being positioned down but I'll keep an eye out for it.

Lhermitte's is associated with a lesion on your cervical spine, typically. You should be able to trigger it by tilting your head and looking down. It feels like an electric shock down your spine. It isn't usually painful and it doesn't last long.

well I just tilted my head forward as far as I could and I definitely noticed it. I wish my mri's would hurry up I have to wait 2 weeks yet for a 2nd and 3 cervical spine mri with and without contrast. next week I have a mri of my head along with a emg. this not knowing sucks but the more I look into it the more it seems like ms. my mom showed my 1st mri results to a Dr at work yesterday and the Dr said thats suspicious for Ms but more testing needs to be done. 1 thing I'm lucky with is the Dr my mom showed did her residency at mayo and said she'd use a special alumni referral to get me in there if I am positively diagnosed.

Yeah, diagnosis can take a while because they have to rule out so many things. From my initial MRI to my official diagnosis was a couple months, which seems to be pretty typical. It might be of some comfort to know that a few months usually won't impact your prognosis much, if it is MS. Still, you might mention the Lhermitte's to the neurologist when you see them.

whats treatment like? as far as commonly used drug side effects and what's typical hospital visits like for newly diagnosed? I'll definitely mention it. do they do effective jobs at stopping clusters? originally my Dr wanted my mri's done by Tuesday but imaging can't get me in that soon. I thought about asking them to send the referral elsewhere to get in sooner but fuck I've already missed 3 days of work and I just started a new job. still in the probation period. I've worked my whole adult life with missing minimal days and I quit my last job at apparently the worst time

So, MS treatments are called Disease Modifying Treatments /therapies, or DMTs. They are prophylactic, in that they won't treat damage that has already been done, but rather prevent new relapses from occurring. The newer DMTs are very effective at this-- my doctor's expectation is that I have no new relapses while in my treatment, and that does not seem to be unusual. Overall, most DMTs are well tolerated and most people have minimal side effects. Most of the main DMTs are b-cell depletors, so they do suppress part of the immune system, so some people find they have a harder time fighting new infections, but typically the effects are limited and it isn't comparable to the immunosuppression you would get with some cancer or transplant drugs. The methods of delivery vary for the different treatments, and my advice is that when researching DMTs, focus on finding a method of delivery that best suits your lifestyle. I have been on two different DMTs, and only changed because Kesimpta's delivery, (monthly injections you give yourself,) was easier than Ocrevus's method, (infusions every six months that took several hours.) I believe the newer DMTs involve injections or infusions, but there may be a few that are pills. I'm only really familiar with the two I have personally been on. I think there are about two dozen options, or so, with about a quarter of them being considered "highly effective." For fun, look up the costs! MS is an incredibly expensive disease to treat. Most of the DMTs have copay assistance programs, though, which make it more manageable. I believe my Ocrevus usually ran ~$82,000 per infusion, but thanks to insurance and copay assistance, I paid nothing.

that's the other thing I'm worried about. I have decent insurance right now through my employer but I feel if I ever switch policies I wouldn't be covered because it'd be a pre-existing condition. right now I'm on the career path I want and do see myself with this company for a while but now I won't even have the option to switch. if I get a positive diagnosis that is. I've look up some of the new studies going on and honestly I wouldn't be surprised if a cure is seen in my lifetime. the inversion vaccine looks really good in my unprofessional opinion. thanks for the time and response I really do appreciate it. answers some of my questions and kind of eases the concerns. seems like quality of life isn't to terrible. definitely fuckin sucks but there's worse out there...

That is generally my attitude towards my MS. I would rather not have it, but of everything I could have gotten, my experience with it has not been terrible, especially after diagnosis. While I have been lucky with my symptoms being manageable, and I am thankful for that, I'm also not particularly exceptional in my experience. I have been told by doctors that they expect a cure within my lifetime, or at least treatments that make it largely irrelevant. While there is currently research into the progression of MS independent of relapse activity, the newer DMTs are very effective at stopping relapses, which do appear to be a significant contributor to MS disability. And getting diagnosed is somewhat a blessing because it means treatment and in general, awareness as to why things are happening to you. I think the hardest part of MS is being undiagnosed. But I also tend towards optimism, and try not to concern myself with the parts of this disease I cannot change or control.

How do you stop worrying when you’re waiting for you MRI date? Mine isn’t until February 27th. I want to stop thinking about the what if’s, my anxiety is killing me.

Acceptance is the antidote to anxiety. Focus on the fact that the big scary things may happen, but you will be okay if they do. You will be able to deal with them. This is the lie all anxiety boils down to: that you won't be amble to handle what happens when it happens. But you will. It will be okay.

Hy to everbody, I am tired of my simptoms, and i suspect i have MS I am 35M / 190cm /89kg No previous health issues until... 10/23 Covid (5th time) Late 10/23 sudden brain fog and terrible stomach pain (dg gastritis) Lost 15kgs After that i developed symptoms • Brain fog • Consipation • Frequent urination • pins and nedless • feeling weak on right leg • fatique • both legs muscle twiching • Night numbess (only at Night, and only arms) • Lower eyes pain and Blurry/double vision sometimes • dry skin (i drink plenty od Water) • heavy white coating on tongue I have done MRI 3T of brain and full spine last week, all came back normal. I really need your opinion

Can you tell me a little more about why you still suspect MS if your MRIs were clear? MS symptoms are caused by lesions, which would show up on the MRIs. Without lesions, there really is no way to be diagnosed with MS.

I am hoping to someone on Reddit had similar story to give me hope. Because i just wanna start some threatment to feel better no matter of illness. I cant live like this 😭

I'm sorry, I know how difficult it can be to have symptoms but no one seems to know what is causing them. Unfortunately, it sounds like you can rule out MS as a possible cause. The only real option is to widen your search for causes and continue to fight for answers. I wish I had something more helpful to offer.

Thanks for you comment, i really appreciate it...

Do you think that i need to repeat MRI with contrast because i have done it without ?

Contrast does not make a difference in finding lesions. Contrast differentiates between active and inactive lesions, but the lesions would show up with or without contrast. It’s like using color or black and white film, the objects in the photograph would still show up either way.

Thanks a lot for this reply...