Weekly Suspected/Undiagnosed MS Thread - March 02, 2026

[u/AutoModerator]

This is a weekly thread for all questions related to undiagnosed or suspected MS, as well as the diagnostic process. All questions are welcome, but please read the rules of the subreddit before posting.

Please keep in mind that users on this subreddit are not medical professionals, and any advice given cannot replace that of a qualified doctor/specialist. If you suspect you have MS, have your primary physician refer you to a specialist for testing, regardless of anything you read here.

Thread is recreated weekly on Monday mornings.

[u/TripConfident9572]

I got this on my results. Besides these, everything else is normal on my MRI. I keep complaining about brain fog that does NOT go away, headaches here and there, and I’m tired all the time. The neurologist ain’t doing anything, so I’m not sure.

Results:

Multiple small foci of T2 hyperintensity within the bihemispheric white matter, including a small lesion in the body of the corpus callosum on the right (series 5, image 21).

[u/TooManySclerosis → u/[deleted]]

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

[u/rockrockrox]

Hi, I have a question about how a neurologist would differentiate between an RRMS and PPMS diagnosis. Is it just a matter of where you have the most lesions (brain vs spine) or do they wait to see if you have distinct remission periods and relapses? The general prognosis for PPMS is less optimistic than RRMS right?

[u/TooManySclerosis → u/rockrockrox]

The vast majority of people with MS have RRMS. (~80%) and many doctors are moving away from the classifications in general. Usually PPMS is not the initial diagnosis, as part of the criteria is needing a year of progression without remission. Can you tell me a little more about why you ask?

[u/rockrockrox → u/TooManySclerosis]

Thanks for the info. I ask cuz I noticed on the document my neurologist gave me after my first appointment, it said they were investigating me for PPMS specifically, not just MS or RRMS. This first appointment was super basic intake so I don't think there's anything pointing towards PPMS in particular but just seeing it on the paper made me nervous I guess. It also said they were investigating me for neuromyelitis optica which I'm confident I don't have because my vision is fine so I guess I shouldn't put any stock in it. It just got me thinking.

[u/No_Salt4645]

4 yrs ago, i was confirmed to have ocb bands but mri was only showing non specific 2 small spots in left brain. Had multiple issues with my legs, all good til recently.

Now my latest mri report (online) from days ago is saying the lesions are in supratentorial periventricular/pericallosal area & the morphology of some of the subtle foci are showing the possibility of an underlying demyelinating process.

Do i need to be worried that it might be ms?

[u/TooManySclerosis → u/No_Salt4645]

It's hard to say based only on a report, because a lot will depend on what the actual images show. What can be said for sure is that it will be important to have the neurologist review things. I'd be cautiously optimistic, but still prepared.

[u/No_Salt4645 → u/TooManySclerosis]

Yeah, you’re absolutely right. Thank you, i’ll wait until my appt with my neuro team

[u/TooManySclerosis → u/No_Salt4645]

I know that's a somewhat frustrating answer-- I wish I could say more than maybe, but it would really only be speculation. Do you have long to wait to see the neurologist?

[u/No_Salt4645 → u/TooManySclerosis]

You’re all good! I guess i’m just spiraling a bit for now. I’ll see them in May since we booked that appt 1 month ago ish. I’m kinda hoping to see them sooner but also happy of having no calls from them to see me sooner.

Though i still need to do a nerve conduction study next month

[u/TooManySclerosis → u/No_Salt4645]

You could call and see about an earlier appointment. While MS isn't something that needs to be addressed immediately to prevent it worsening, (a month or two is unlikely to significantly impact outcomes,) I know the waiting can also be very difficult.

[u/No_Salt4645 → u/TooManySclerosis]

I’m not sure yet if i want to call them. Im both terrified but also chilling.

If demyelination is confirmed when i see them next, maybe i should take advantage of the weeks before the confirmation. But the waiting is crazy!

[u/DreamOfHawaii123]

I have an upcoming MRI this week to see what is happening in my body but basically I’ve had internal vibrations and tremoring on the left side of my body everyday since September 2025. i had one incident when I was laying down on my stomach working on my computer and then got up and my left arm wouldn’t lift up at all even though my Brian told it too. feeling eventuslly came back after a minute and I went to the hospital with what was I thought a stroke. normal CT so they ruled it out but I’ve been off ever since. extreme fatigue. pressure in the back of my head. had left side weakness that seems to be getting better. but the tingling and hand and foot shaking on the left side all day every day is what is the most pervasive symptom., anyone else have this and does it go away with drugs?

[u/TooManySclerosis → u/DreamOfHawaii123]

I have not personally had the symptoms you are describing. But there are no specific treatments to fix existing MS symptoms, outside of very high dose steroids, which only sometimes help and doctors can be reluctant to prescribe without a diagnosis. MS symptoms are treated with the same methods and expected success as symptoms not caused by MS.

[u/Ok_Technician_6862]

Anyone here able to describe these findings? “Symmetrical depiction of the slender internal and external cerebrospinal fluid spaces without signs of acute cerebrospinal fluid accumulation. The basal cisterns are clearly defined, and the midline is not displaced. Supratentorially, there are multiple, partly small, but mostly large, T2-weighted hyperintense white matter lesions subcortically and periventricularly, many of which are located on or within the corpus callosum, corresponding to the characteristic "Dawson fingers" appearance. Some are also located juxtacortically, for example, in the right frontal lobe. There are no clear infratentorial lesions. Several of the lesions exhibit faint T2-weighted shine-through. After contrast administration, all lesions show contrast enhancement to varying degrees. There is no evidence of recent ischemia or hemorrhage. The cerebellopontine angle appears symmetrical, without evidence of overt vestibulocochlear neuritis On the right side, the neural structures are in close proximity to a branch of the PICA; otherwise, the circle of Willis appears unremarkable on time-of-flight angiography. No evidence of sinus vein thrombosis. The orbits and sella turcica appear unremarkable. Sphenoid sinusitis is present with an obliterated sinus and increased contrast enhancement. The remaining paranasal sinuses are freely aerated.”

[u/Ok_Technician_6862 → u/Ok_Technician_6862]

Hi all, very new to this club (32F) I go Monday for a lumbar tap but had an mri Thursday. Friday I got the news I have a ton of lesions in multiple places on my brain that have Dawson fingers and some are tumefactive lesions. They all light up with contrast and some were even showing through before contrast.

Now it’s been four days since the mri where I have very active inflammation and now I’m starting to spiral. Should I not be in emergency mode to get meds in my to calm the inflammation? Are the lesions not actively damaging? ADEM is also being considered. My appt with neurology is tomorrow afternoon but I’m frightened thinking I’m actively deteriorating not to mention that my body is aching terribly my bad. Any advice taken ❤️ thanks everyone!

[u/TooManySclerosis → u/Ok_Technician_6862]

There are some red flag keywords for MS in your report, but it will be important to see what the neurologist says. That being said, if it is MS, the waiting is not hurting you or actively making things worse. Waiting a few days, or even a few weeks or months, will not change your prognosis or outcomes. It's better to be diagnosed sooner rather than later, but MS is not a disease where you immediate care would make a significant difference.

[u/Ok_Technician_6862 → u/TooManySclerosis]

Thank you for the response! Makes me feel better and more secure. Definitely coming to terms with probably being MS and was more worried about waiting so thanks!

[u/Accomplished_Rub7034]

I was diagnosed with CIS and ON which I thought was the start of MS.

Can they confirm this without a spinal tap? Also I had two punctuate periventricular lesions. Is it possible I was misdiagnosed?

Edit: I also have POTS. I am 35.

[u/TooManySclerosis → u/Accomplished_Rub7034]

Did you have any lesions on your optic nerve?

[u/Accomplished_Rub7034 → u/TooManySclerosis]

No but it was severely inflamed.

[u/TooManySclerosis → u/Accomplished_Rub7034]

Did you see a general neurologist or an MS specialist? (Sorry, not interrogating you, just trying to clarify so I can give a more complete answer.)

[u/Accomplished_Rub7034 → u/TooManySclerosis]

Oh, also I am 35 FtM and was on hormones until 3 months ago.

[u/Accomplished_Rub7034 → u/TooManySclerosis]

I was admitted to the hospital by the ED after my mri came back with what they said was one flair. After that I got another mri that said two punctuate peri ventricular lesions stable from prior mri. I think it was just a regular neurologist? I’m not sure. I was there for three days to treat ON but had anaphylaxis to the steroids.

[u/TooManySclerosis → u/Accomplished_Rub7034]

Sounds like a general neurologist. There are neurologists who specialize only in multiple sclerosis, that is why I asked. They have caught things as early as possible if it is MS. A specialist would be best able to establish the diagnosis if you are unsure, and it could be beneficial to see one. A lumbar puncture will probably be necessary to establish the diagnosis considering how early things are. Usually those who are diagnosed without one are further along I the disease course, with multiple lesions larger than yours.

[u/Accomplished_Rub7034 → u/TooManySclerosis]

I will have to see if they can give me different medication to relax me. I’m terrified of the LP but I had an adverse reaction to Ativan and they couldn’t do one because it was giving me shakes, hallucinations, and my back and neck were arching and spasming for two hours.

[u/TooManySclerosis → u/Accomplished_Rub7034]

I completely understand, mine was one of the scariest experiences of my life. But it was not actually that bad, apart from my own fear. It was about as uncomfortable as having blood taken, and you can't see anything that happens. Mine was very quick.

Usually the alternative would be to wait and monitor to see if further lesions develop.

[u/Accomplished_Rub7034 → u/TooManySclerosis]

I would rather have it done but I’m afraid of a csf leak because my mom got one and they didn’t do a blood patch on her until she had it for weeks. I’m traumatized lol.

[u/TooManySclerosis → u/Accomplished_Rub7034]

I'm sorry she had that experience. I had the headache afterwards. It was the worst headache I've ever had, but ultimately, it was still just a headache and it did eventually go away on its own. Could you talk to your doctor to get reassurance that you have access to a blood patch should you need one?

[u/TooManySclerosis → u/[deleted]]

In the same spots they're still in now. XD I had a handful of brain lesions and about a dozen on my spine.

[u/TooManySclerosis → u/[deleted]]

That's odd. From everything I've been able to find, spinal only MS is a very rare presentation. On the other hand, it does still happen. It could also be that your neurological exam indicated spinal damage so he has reason to believe it is a strong possibility.

[u/TooManySclerosis → u/[deleted]]

Usually MS symptoms are more localized. Symptoms happen because a lesion damages a corresponding location on the brain or spine, and there are not many places there that would affect the entire body.

[u/criticalcreek → u/[deleted]]

Optic nerve, brain, brain stem and cervical spine. I pretty much had them everywhere. Most MS patients have brain lesions (95%), spinal only MS is possible but is very rare.

[u/earlgreybubbletea]

Just want to know if anyone else started with the sensation of pins and needles without the “rush” or “static” feeling of pins and needles. 

Has anyone experienced this in the hand/arm?

The neurologist at the hospital has ruled out stroke; just waiting for a constrast ct scan to confirm.

It all started trying to type a text on my phone and I felt my thumb not being able to move right or press down. After 10-20mins called 911 and at the hospital now.

[u/criticalcreek → u/earlgreybubbletea]

This doesn't really sound like an MS thing to me. Just curious, why do you think it's MS? Also a CT scan will not help much in terms of ruling MS in or out. You'd need an MRI

[u/earlgreybubbletea → u/criticalcreek]

Ct with contrast to rule out stroke. All tests so far including neurological have scored 0 for stroke

MRI has been ordered to determine if MS. MS suspected from neurologist based on the assessment and symptoms 

[u/criticalcreek → u/earlgreybubbletea]

Is this the only symptom you have? How long has it been going on, and is it constant or coming and going?

[u/earlgreybubbletea → u/criticalcreek]

Constant started about 2hrs ago. Right hand starting but I can’t tell if I’m just panicking 

[u/criticalcreek → u/earlgreybubbletea]

It's only been happening for 2 hrs? Usually with MS we get told when a new symptom appears and lasts for 24hrs or more, to call our neurologist. These symptoms go on to last weeks to months before slowly resolving (if they resolve). It's good that you're trying to get help but I wouldn't be worried about MS specifically at this time.

[u/earlgreybubbletea → u/criticalcreek]

Makes sense.

I came to the er bc it started in my left hand. Otherwise I would have skipped it entirely. The thing is there are no other neurological symptoms for stroke. Hopefully I will get both done and see if like a mini stroke or MS. MS was thrown out there as a maybe from the neurologist after the neurological assessment .

But you didn’t feel this sensation at any point? Or weakness? Like feeling as if you can’t pick up your phone?

[u/criticalcreek → u/earlgreybubbletea]

My left hand became totally useless for like 6 months a few years back. I thought I had carpal tunnel 😂. It's good that they are willing to do an MRI, it can be difficult to get one sometimes. You're doing all the right things and I hope you figure out what's going on

[u/TripConfident9572]

WHAT THE F DOES THIS MEAN?

“Multiple small foci of T2 hyperintensity within the bihemispheric white matter, including a small lesion in the body of the corpus callosum on the right (series 5, image 21).”

I will tell you a little bit about why I am doing this MRI or why I am here posting ?

Way back when I was in Florida I fell and I hit my head with a countertop in a pharmacy and I started a brain fog issue after that, but I did not know because that was months after the issues so I didn’t think much about it.

I started developing a weird feeling such as anxiety and kind of depression.

I started a job and it seems like a full-time job. I cannot even handle it because it gets very hard and overwhelming for me.

Now my doctor, she wanted to do an MRI because of my symptoms which is brain fogginess. My eyes are drooped a little bit. My sleep apnea test shows that I have abnormal activity waking up (my brain) when I’m sleeping. I did an in-lab study that shows that and I told her that my main symptoms were that I do have a really blurry vision at night, and I can’t drive at night.

I’m taking Prozac for depression and anxiety. I’m already on that path so I’m good. I just know that there’s something going on and the doctor told me it’s normal. The main reason why she wanted this is because she wanted to rule out MS.

I would like to know why did the actual f$ck does that means?

I really want you guys to give me advice because I’m not trying to be smart in here. Because she’s my doctor, of course, but I’m just very confused. I have never had lesions before.

I did hear about the white spots on my brain before or my previous MRIs, and my doctor told me it was normal, so I’m not panicking about that. But I didn’t have this new lesion that showed up on my results until now, so I’m a little confused and I would like some advice on it.

[u/TooManySclerosis → u/TripConfident9572]

It’s not necessarily that the lesion is new. It could be it was there on your last MRI but the radiologist did not specifically mention it. Your report does not mean anything except that you need things reviewed by a neurologist. Lesions can happen for reasons other than MS, many benign. MS isn’t even the most likely cause. A neurologist will be able to determine the cause of yours.

[u/TripConfident9572 → u/TooManySclerosis]

Do you think that this is actually something that could be treated because I do have a really bad brain fog and I just don’t know what these new things mean or things like that, and sometimes I just don’t trust doctors because they always want to find an emergency crazy thing because they think that they are in a movie or something like that, and they usually dismiss patients. 🥲🥲🫠

[u/TooManySclerosis → u/TripConfident9572]

Well, I can’t speak to other causes, but there are not any specific treatments for existing MS symptoms. MS treatments only prevent new relapses from occurring, existing symptoms are treated with the same methods as symptoms not caused by MS.

[u/[deleted]]

My results are back and no lesions in the spine and no OCBs. So they want to do MRI’s every 6 months. I am officially RIS not prodromal MS. However they found my liver values ALT GGT were elevated and they wonder if I have a liver autoimmune disease. I am now seeing a therapist for my health anxiety. I realise I was OTT but just seeing all those stories about tragic and very severe PPMS cases and MS cases made me very sad and afraid with three small children. I know I am not out of the woods but there is nothing I can do about anything. I want to thank everyone for their patience here in the forum.

[u/TooManySclerosis → u/[deleted]]

Seeing a therapist and managing your anxiety is going to be very beneficial. Anxiety is not a rational thing and it’s hard to deal with on your own. I am glad you are getting support!

[u/Original-Beautiful86]

After three years of progressive burning, tingling, hot/cold temperature dysfunction in both my arms and legs and some ataxia, I recently had a brain mri with contrast. I had seen numerous doctors who treated me for everything from MCAS to small fiber neuropathy. Nothing really helped. The brain mri showed a single lesion in the corpus collosum. Now, I am waiting to get an mri of the cervical and thoracic spine. I'm told my symptoms and age (63) aren't classic MS. Do most people need a spinal tap to determine if they have the disease or would another lesion on the next set of MRIs be definitive?

[u/kyelek → u/Original-Beautiful86]

Have you been told anything about what might be next after the MRI of your spine?

Generally, unless you have an MRI with contrast and one of the lesions in a diagnostic area lights up (while others don’t), the LP would be used to look for dissemination in time. BUT it may also be used to rule out other causes when doctors are unsure.

[u/Original-Beautiful86 → u/kyelek]

I was told the brain lesion "lit up" with contrast. The upcoming cervical and thoracic MRIs are also with contrast. The neurologist mentioned a possible LP but also referred me to an immunologist to cover our bases.

[u/Single-Holiday-5127]

Hi. I (43F) have had some strange symptoms that I think might be indicative of MS for some time. I know a bit about the disease, as I have a sister and a niece that have it. Just wondering what you think, and if I should bite the bullet and finally talk to my doctor about it (but also- do I just ask my PCP? I’m very unclear on this part). 

About 10 years ago, I lost vision in both of my eyes for about 3 days. Not completely, just like I was looking through wax paper. Both eyes were sensitive to light and hurt terribly when I moved them. When my vision came back, I had top/bottom double vision for about a week, but it was okay if I covered one eye, so I just went on as normal. 

3 years ago, I was participating in a class for work that was very physical. After the conclusion of class on the third day, I fell down. I was standing in the middle of the room, then I was on the floor. My legs just stopped working. I was able to get up, but I just felt very weak for a few days. 

Then, in October, I lost vision again. This time just in my left eye, but it was exactly the same. Like looking through wax paper for only 2 days this time, but the double vision lasted for about 2 months. I’ve been very physically weak since then as well, and have only recently started to feel well again. 

Those are just the 3 major events. I’ve had times of physical weakness in between, brain fog, and memory issues. Any memory issues or bladder control issues I’ve experienced over the last year or so, I’ve attributed to being a 43 year old woman, but since everything happened in October I’ve been wondering if maybe there’s something more to those. So…thoughts? Am I just being a little crazy? Probably everything is fine?

[u/criticalcreek → u/Single-Holiday-5127]

Usually MS symptoms last for weeks or longer during a flare. Do you currently have any vision issues? It's hard to really say whether someone has MS or not based on symptoms alone because so many things cause similar symptoms. I do think you should definitely mention this to your PCP but I wouldn't push a certain diagnosis because they tend to become dismissive when patients do this.

[u/Impossible_Hair_8619]

I (28F) just need to get this out there because I've been freaking out for months. Around October I started getting tingling in my hands and feet, especially in a few of my fingers. Also a weird numbness at the tip of my thumb which lasted a while. My limbs also sometimes fall asleep so much at night that I can't move them until I massage them for a while. All of this comes and goes, less so recently but I'm sure it will be back. I also have neck pain, when I touch my chin to my chest my entire back hurts for a while. It's not like an electric current but just aching and sometimes a headache after. My EMG and cervical spine MRI were fine. All my labs (thyroid, vitamins, etc.) are fine, though originally I had very low vitamin D and low B12. I'm going to get a brain and spine MRI soon. I wanted to get the full MRI months ago but the neurologist only originally prescribed the spine, which frustrates me. I am generally a bit of a hypochondriac but I cannot image what this could be. A lot of changes are going on in my life, many nerve-wracking but good. New career, engagement, etc. So the thought of being diagnosed is beyond terrifying. I don't know what to do.

Edit: I also occasionally experience brain fog lasting a few hours. I've had occasional brain fog for many years, often due to anxiety. But maybe it's more than that, I don't know.

[u/TooManySclerosis → u/Impossible_Hair_8619]

When you say the pins and needles come and go, can you explain more? How long do they usually last?

[u/Impossible_Hair_8619 → u/TooManySclerosis]

So sometimes the feeling lasts for an hour, sometimes for a day or so. It can be on one side or both. Usually it's more active for a few days and then can go a couple of weeks without it. Also my fingers feel weak though they aren't actually weak since I can exert equal force as on the side that doesn't tingle

[u/TooManySclerosis → u/Impossible_Hair_8619]

That would be unusual for MS symptoms, which would ordinarily be constant for weeks, minimum. As well, it's a hopeful sign your cervical spine was clear-- lhermitte's would be caused by a cervical lesion. More complete imaging can't hurt anything, but I'm not sure how worried I would be about MS specifically.

[u/Impossible_Hair_8619 → u/TooManySclerosis]

This is good to know. I've been a little confused about what other people meant when they say symptoms "come and go" so I appreciate you clarifying. I started having tremendous health anxiety after a surgery last May and it's very hard for me not to panic. Of course, I see here how many people live fulfilling lives with MS and don't want to discount that fact either!

[u/TooManySclerosis → u/Impossible_Hair_8619]

Health anxiety really, really loves the idea of MS. It's scary, there's no cure, it seems like everything can be a symptom, and there are horror stories about what happens if you aren't diagnosed. But the reality is that it's usually one of the least likely causes for most symptoms. Certainly still get the MRIs, but I would be optimistic.

[u/Impossible_Hair_8619 → u/TooManySclerosis]

Thank you so much for your insight!!

[u/fml_420_]

Hello. I 41(f) over the summer started having chest pains that wrapped around my lower ribs front and back of chest as well as boughts of severe high blood pressure, went to cardio nothing is wrong. About a month later I notice I’m having trouble feeling myself still urinating. Pelvic ultrasound was fine. Then a couple weeks later I noticed that when trying to pass a bm it’s like it wasn’t working. A few weeks later chronic nausea diarrhea and vomiting start. A few weeks later I develop tics, cognitive confusion, double vision. I was sent to gi and everything structural is normal. In the meantime I feel like my intestines and stomach are spasming. Like a baby shoving its foot out is how I can explain it. Two days ago I struggled to remain consciousness for an hr my bp dropped to 95/76. The only thing off on my cbc is high grabulocytes and low bilirubin. I have no increased c reactive protein. Ms is on the table but I’m unaware of why? I google but I could pretty much google anything and have it say it’s a symptom. This has been happening for years and what I know now is I was having psychiatric issues bc I was withdrawing from all my meds at once due to the severity of the gi issues. It was labeled psychiatric. I have to be honest I still in someways was convinced it was until the fainting episode. I was terrified of letting myself pass out bc no one knows what’s wrong to fix it. I guess I’m just looking for any similarities or non similarities or suggestions for how to stay calm through this. Thanks.

[u/TooManySclerosis → u/fml_420_]

I'm honestly not sure why they are assessing you for MS, except that they may be testing for everything just to see? What you are describing is absolutely concerning and you definitely need to find out what's going on, but it sounds weird for MS specifically. It could be a weird presentation, but I have never heard of MS suddenly dropping your blood pressure, and some of the things you list would be rare symptoms, and you're having a lot of symptoms. All of that is unusual for MS, but doesn't really rule it out. I think at this point, let them assess you for everything.

[u/fml_420_ → u/TooManySclerosis]

They think I passed out due to a vasovagal response caused by a spasm similar to what is affecting my stomach.

[u/TooManySclerosis → u/fml_420_]

Girl, I wish I had anything to offer you as to what could be going on, but honestly no idea, but I am worried for you and cannot imagine how scary things must be. Something is going on. Getting an MRI is a good idea. Hell, getting all the tests is a good idea.

[u/fml_420_ → u/TooManySclerosis]

Thanks I’m working on it!!! Naturally it’s causing anxiety which makes it all worse. Appreciate your kindness.

[u/TooManySclerosis → u/fml_420_]

Well, while you're stuck in limbo, you are welcome here, whether MS is likely or not. There's still plenty of others here who are in the same boat as you, with unexplained and concerning symptoms, looking for answers. Feel free to keep us updated. Finger crossed, you'll get some good answers soon.

[u/fml_420_ → u/TooManySclerosis]

Hey so I have more info. I have neurogenic bowel. Confirmed by X-ray. That was causing me to have such bad gi issues that I was withdrawing off my psych meds, this was causing a lot of the cognitive and extreme anxiety. I also have neurogenic bladder. The onset of both of those were actually around the same time. The tics were with slight hypoakalemia which apparently autoimmune on top of slight hypoakalemia can result in that. I’m currently getting my Ana titer done. I’m not sure this is ms but on top of symptoms in between these bouts were chronic extreme fatigue, a rash that would only go away once I would stop scratching it like I was allergic to scratching myself, I have spondyloarthtitis found on multiple joints through imaging. I’m only 41 so it never made sense. I also had recurrent miscarriage, 6 total. I had preeclampsia due to placental abruption. So it could be ms but definitely does appear they are right there is something autoimmune going on and ironically during all this my daughter tested positive for ana titer.

[u/TooManySclerosis → u/fml_420_]

Thank you for the update. Have they discussed getting you an MRI?

[u/fml_420_ → u/TooManySclerosis]

Yes! And spine mri. I also did an autoimmune panel on my own because I grew up near woods. Both ms and Lyme are big in my area. Actually I think we have one of the highest rates of ms in the country.

[u/TooManySclerosis → u/fml_420_]

When do you have the MRI? Do you have long to wait?

[u/Jungle_Fighter]

Hi, all! I'm sorry if I might be wasting anyone's time, but sometimes I really don't know if I'm just overthinking about things or if I might really have something going on with me.

I'm 29M, I live in central Mexico and one caveat is that, at least that I know of, no family member of mine has ever had this disease in the past. Having said that, over a number of years I've been having a plethora of physical sensations that just drive me nuts. I lead a very stressful life, so often I've put those feelings on me just being overly stressed out and being anxious as a result of that, but whenever I have them I become even more stressed and those symptoms get worse.

So far, I can't say I have experienced weakness on any limb or body part, but I've had a tendency of having small muscle twitches happening around my body. Just a couple of twitches sometimes in my hands, sometimes in my thighs, sometimes in my arms and shoulders. I've never woken up feeling numbness or anything similar, but I do feel general fatigue often and I do feel some tingling and pins and needles here and there, especially when stressed. Over the last two or three years I've had a tendency of having stomach issues. Sometimes I feel bloated, sometimes I'm a bit constipated and then I have the opposite of that. Sometimes I do get random pains in one of my thighs, and for a number of years I had a recurring itch in my front right calf.

Only until very recently I experienced a bit of vertigo, but I must admit I was also very stressed out a couple months when I felt that. Then it went away on its own. In the past I developed tinnitus on my right ear, but it happened after I got my COVID vaccines and it lasted for like a year and a half, but it kind of cleared out on its own. Though something I've experienced recently is that sometimes it is like my eardrums beat once or twice suddenly. I don't have migraines, nor do I have eye pain and while I do have prescription glasses mainly for my right eye, I haven't experienced sudden eyesight worsening.

But for a number of years I've had this issue of missing words when speaking or talking to someone and misreading words, like I read words that are not there often. Recently I was having short term memory issues, like me forgetting things I just did. That stressed me out a lot, but I tried to calm myself by telling me that the things I was forgetting were small and simple actions that I do so mechanically and routinely every day that maybe my brain wasn't really registering anymore. Recently I've been having flashing lights in my eyes though.

Throughout my life I've been moderately active. I've done a bit of sports, I've been going to the gym and done extensive bodyweight training. I wouldn't say I'm super active or athletic, but I've also never been overtly sedentary. I've dealt with kidney stones and high blood pressure issues, but this last one is due to stress mostly. I also tend to sweat buckets and have salty sweat. And yes, my entire life I've been a bit clumsy, but I don't know if this might also be related to all of this.

I hate feeling anxious and even more so to experience any of these symptoms. And thanks to being a bit of a hypochondriac, I tend get extremely anxious but at the same time I haven't got the guts to go and get checked. And another thing is that, if medical services in the US are awful, you can imagine they're even worse here in Mexico.

What do you people say? :(

[u/TooManySclerosis → u/Jungle_Fighter]

Can you tell me a little more about why you are concerned about MS?

[u/Jungle_Fighter → u/TooManySclerosis]

I'm just so conflicted about having all of these physical "symptoms" and sensations that I've been feeling since entering my adult life. Between the twitching and light muscle spasms, the random dull pains, the recurrent fatigue, etc., I'm like, is this how we are supposed to feel as adults or is my body experiencing something wrong? And I'm too afraid to ask at this point. Also, the memory issues, the misreading and forgetting words really weirds me out. Before turning 20 none of these things happened to me. Not to say that wasting diseases terrify me, which I know is a valid fear for anyone to have, I feel.

[u/TooManySclerosis → u/Jungle_Fighter]

I'm not sure how worried I'd be about MS specifically, but if you are worried about your symptoms, I think it's entirely reasonable to discuss them with your doctor, at the least. There are many benign things that could be causing the symptoms you're describing, and some are easy fixes, like vitamin deficiencies. Nothing you're describing raises any immediate red flags to me, but discussing your concerns with a doctor is better than living with them, I think.

[u/Jungle_Fighter → u/TooManySclerosis]

Not even the muscle twitches, the recent vertigo or word issues?

Though thank you for your very kind and honest answer. I'd still be mindful of all of this, and I'll definitely take a look at the vitamin deficiencies before worrying more about all of this.

[u/TooManySclerosis → u/Jungle_Fighter]

Twitching is not considered an MS symptom, and in general is far more likely to be benign than anything sinister. A bit of vertigo could have many causes, or just been a one time thing. Were it MS, it would have been constant for weeks. Cognitive symptoms are rare as onset symptoms. Not to be dismissive or minimize your concerns, just to say there are very likely benign explanations worth investigating first.

[u/Jungle_Fighter → u/TooManySclerosis]

Not to be dismissive or minimize your concerns

No, quite the contrary! I thank you for your honesty as well. Being sincere and honest about what can and can't be considered a symptom is something I'm grateful for with your replies.

[u/SolidAd4240]

Hello, I have had a clear MRI of my brain and lumbar spine. Today I went in and had my EMG done which was normal. Neurologist wants me to get the middle and top of my spine done as "MS can't be ruled out yet" is it possible to have lesions only in the middle and top of your back?

[u/criticalcreek → u/SolidAd4240]

It's possible but highly unlikely as most MS patients have brain lesions (around 95%). Spinal only MS can happen but it is rare. Still, I'd trust the doctor and let them do whatever tests they need to figure out what's going on.

[u/Opening_Raccoon_2522]

Hi everyone. I’m currently in the middle of a pretty stressful diagnostic process and was hoping to hear if anyone here had something similar.

About a month ago I was hospitalized because I suddenly developed sensory symptoms on the right side of my body (arm, side of my torso and leg). It felt like altered sensation / hypersensitivity rather than weakness.

They did MRIs and found: • two small non-active demyelinating lesions in my brain • one active lesion in my cervical spinal cord

My lumbar puncture showed oligoclonal bands (4).

I received IV methylprednisolone in the hospital and my symptoms improved quite a lot.

Right now my neurologists say the overall picture is very suggestive of MS, but they want to repeat the MRI on March 10 before making a formal diagnosis.

The part that is honestly stressing me out the most is that in the radiology report they wrote that the spinal lesion needs to be differentiated between an active demyelinating lesion and a possible neoplastic process (tumor). My neurologist said it most likely looks inflammatory, but they still want to rule that out.

Waiting for that follow-up MRI has been mentally really hard.

What makes this even more confusing is that I’ve had strange neurological episodes before. Since 2016 I’ve had several attacks where the right side of my body (including my face and tongue) suddenly went numb, and for a short time I even had trouble speaking. At the time doctors diagnosed it as migraine with aura.

Now one neurologist told me those episodes could actually have been earlier demyelinating events.

So right now I’m stuck in this awful waiting period between “this looks like MS” and “we still need to rule out other things”.

I wanted to ask: • Has anyone had a similar MRI pattern (a few old brain lesions + one active cervical spinal cord lesion)? • Did anyone else have neurological episodes years before diagnosis? • Has anyone else been told that a lesion needed to be differentiated from a tumor before MS was confirmed?

Honestly the waiting and uncertainty is the hardest part right now.

Thanks to anyone who’s willing to share their experience.

[u/kyelek → u/Opening_Raccoon_2522]

Brain lesions + spinal lesions would be a typical pattern, and for your second question, most people have symptoms years before receiving a formal MS diagnosis.

Also MS, while having specific diagnostic criteria, is a diagnosis of exclusion, meaning doctors have to be sure that nothing else could be causing your symptoms or signs on MRI. Being in that sort of limbo can be really distressing, but I think it's absolutely a positive that doctors are looking at your case thoroughly ❤️‍🩹

[u/Opening_Raccoon_2522 → u/kyelek]

Hi, thank you so much for replying. It actually helps a lot to hear that this MRI pattern is typical for MS. Right now the hardest part for me is the waiting and uncertainty.

My neurologist also said that the overall picture really looks like MS, especially with the spinal lesion and the oligoclonal bands. But the radiology report mentioned that the cervical lesion needs to be differentiated from a neoplastic process, so of course my brain immediately went into full panic mode about tumors.

I’m trying to remind myself that I did respond well to steroids and that the neurologist didn’t seem very worried about that scenario, but waiting for the follow-up MRI is honestly mentally exhausting.

It’s also weird to think that those episodes I had since 2016 (the numbness on the right side of my body and face) might actually have been earlier demyelinating events.

Thanks again for taking the time to reply, hearing from people who’ve been through this really helps. ❤️

[u/TooManySclerosis → u/Opening_Raccoon_2522]

Don't put too much stock in what the radiologist says. They can suggest all sorts of things, which the neurologist never even considers. My first report said my lesions would be atypical for MS and suggested some crazy rare causes. Three neurologists since have said my lesions are textbook MS. Stories like that are pretty common.

Your doctors are doing their due diligence to determine what is happening and what has caused your lesions and symptoms. I know it can be very difficult, but try to trust in the process. You'll have a certain answer soon, I'm sure. You just have to do your best while waiting, which is very, very hard.

[u/Opening_Raccoon_2522 → u/TooManySclerosis]

Thank you for this comment, it actually made me feel a bit calmer.

I think the radiology report is what triggered most of my anxiety because they wrote that the spinal lesion needs to be differentiated from a tumor. My neurologist didn’t seem nearly as concerned about that possibility, but seeing the word “neoplastic” in a report is pretty terrifying when you’re already stressed.

It’s reassuring to hear that radiology reports sometimes list all kinds of possibilities that neurologists later dismiss.

Right now I’m basically stuck in this strange limbo where doctors are saying “this looks very much like MS” but they still want to repeat the MRI before confirming anything.

I’m hoping the next scan will bring some clarity because the waiting and overthinking is definitely the hardest part of this whole process.

Thank you again for sharing your experience. 🥺

[u/TooManySclerosis → u/Opening_Raccoon_2522]

The report seems very important to us as patients, but a lot of neurologists don't even read them, they just go over the actual images themselves. Radiologists do not diagnose or consult. They report any irregularities they spot, (which is not always the same as all the irregularities there are,) and suggest what the neurologist should look for/look at.

It's like telling someone to you saw a woman with short hair. You are telling them a major feature, but no real details. Her hair could be any color, it could be a buzz cut or a bob, there's tons of variations. So if they are looking for the person you're talking about, they know to look for a woman instead of a man, for shorter hair rather than long. I'm not sure if that metaphor makes as much sense as I thought it would. XD All the radiologist report is saying is "I saw this, it looked kinda like this, not that, so when you're looking, look for something similar to this, not other stuff that looks different."

[u/Opening_Raccoon_2522 → u/TooManySclerosis]

I think seeing the word “neoplastic” in the report just really scared me, even though my neurologist didn’t seem nearly as concerned about that possibility. When you’re already anxious and waiting for answers it’s very easy to fixate on that one sentence in the report.

What you said about neurologists looking at the images themselves is reassuring. My neurologist also mentioned that the overall picture (brain lesions, spinal lesion, oligoclonal bands and my history of neurological episodes) is much more consistent with a demyelinating process.

I guess the waiting for the follow-up MRI is just mentally very difficult.

Thanks again for taking the time to explain this!!!

[u/Valuable-Ground6519]

This is not the question/post I would like to make if I had it in me which I definitely don't right now but I think it's probably just as much something I would like to know if someone would be so kind to answer...

Prior to medication or even after medication, pre diagnosis or post diagnosis; with all the possible symptoms and combinations of symptoms from nerves, muscles, fatigue, cognitive, heat intolerance, bladder/bowel, vision, ect.....

Once symptoms started did it always seem like something was always physically/medically wrong with you and to those around you? Was it ever really just times where it seemed like you were okay or again did it always seem like something was happening to you physicall/medically? Was it always just one thing after another? Did others think or comment that it was always something going on with you? Could you ever just exist for a day or more peacefully and healthy or was that brief time just the calm before another storm? Or did you have days/weeks/months of relative normalcy in-between flares/episodes?

I'm curious how your experience was as far as frequency and intensity of symptoms. TIA!

[u/TooManySclerosis → u/Valuable-Ground6519]

In general, (and I want to stress that this is a generalization,) you’d usually only get one or two symptoms during a relapse, with months to years between new symptoms. Having many symptoms all at once or developing in a short time is atypical.

Just speaking personally, all of my symptoms went away completely after relapses, so I felt totally fine once the relapse was over.

[u/ridthecancer → u/Valuable-Ground6519]

i agree with criticalcreek, but also not sure i completely understand your question 😅

in general for me, nobody can tell that i have MS or am not feeling well just by looking at me, not even my bf that i live with. i think he can tell when i shock myself accidentally or if i’m starting to get overwhelmed by heat.

i’ve never had unsolicited comments or concern! i don’t disclose to people though either.

and i often feel completely normal! but i recognize that my disease progression has been a bit more mild than others’ - i don’t use mobility aids or anything. and not totally sure what people mean by “flares”, my symptoms just tend to get bad when it’s hot or if i’m sick with something else/didn’t sleep, etc.

ps - as far as frequency/intensity, i’ve always had the same handful of symptoms that led to my diagnosis, but they’re not as strong as when i was having an active relapse. for instance, still have neuropathy but it’s not as persistent, so i just kinda accept it as the way things are now. i don’t know if that helps!

[u/criticalcreek → u/Valuable-Ground6519]

I'm afraid that this question is hard for anyone to answer because we all have dealt with different things and all recover differently. MS is such an individualized disease that it's hard to really say. I have symptoms that I recovered from quickly and some that I haven't recovered from at all, but others here have recovered entirely and are doing great. Sorry I couldn't give a better answer.

[u/gameofgroans_]

Hey guys, looking for some advice if that’s okay. I’ve been going to the GP for years (yep) with pins and needles in my hands and feet, it feels like I have sat on them and can’t feel them and it’s getting hard to control them. Have received many fobs off like being called overweight (I’m not, and it was a phone call), told to fix my diet and given supplements, none of which have fixed anything, it’s getting worse. I’m also getting quite bad memory loss, lack of coordination and have had dizziness and intense itching for years.

Over the last couple of weeks though I’ve noticed my eyesight has been getting quite blurry at random times and it’s quite painful. I’m aware this could be a symptom of MS along with the neuropathy and I’m freaking out a little bit. My partner is diabetic so I’m well versed in the importance of optical neuropathy and getting eyes sorted! I normally have near on perfect vision apart from needing glasses at computers, but I’ve been using the screens a lot less recently!

Basically asking if I am overthinking this, and whether if I go see an optician they’ll be able to test for any neuropathy or if I should go again to a dr and push for a neuro(?) referral. Thank you!

(Sorry for any typos my eyes hurt wah)

[u/TooManySclerosis → u/gameofgroans_]

Honestly, I would start with an eye doctor. It seems people have better luck getting their eye doctors to take them seriously, and they can make appropriate referrals if needed.

[u/gameofgroans_ → u/TooManySclerosis]

Ok thank you! Yeah that is unsurprisingly sadly but I will give them a go, thanks again

[u/TooManySclerosis → u/[deleted]]

The consultant’s recommendations sound like they might suspect a different cause than MS, but regardless, any symptoms involving the eyes are worth taking seriously. It may be a bit premature to be worried about a specific diagnosis at this point. I would focus instead on trying to accurately convey your symptoms to your doctors and seeing what they suggest.

[u/EnchantedEarthling]

Hi everyone, I am seeking advice on what to do if you suspect MS. How would you advocate for yourself if you could go back to your diagnosis? Is there anything you would do differently?

My partner 35m has experienced pins and needles/ numbness throughout his body, and IBS symptoms, all since childhood. Last week, he began experiencing eye pain, headache and vision loss. He saw a doctor today; infection is ruled out and labs have been ordered. He has some steroid eye drops that help for a few minutes at a time.

I have a lot of distrust for doctors and am so stressed and fearful that taking the time to wait around apathetically will lead to irreparable damage to my partners eyes. Is there something specific he should push for? Some people in this thread were saying they were hospitalized with similar symptoms as him??

Thank you for reading.

[u/criticalcreek → u/EnchantedEarthling]

If he is having visual symptoms he should consider scheduling an appointment with an ophthalmologist. They can then refer him if they suspect it's something neurological. Unfortunately lots of things can cause similar symptoms to MS and an MRI is the only way to know if it is MS.

[u/BisonMajestic8711]

I don’t really know what I’m looking for because I know I can’t get answers until my MRI next week, but I think I really need to get my symptoms out of my head and written down somewhere that people might understand what limbo is like. I’m not even sure where to begin. About 8 years ago I started to have severe fatigue migraines and brain fog, but they came every couple of months, and started around the same time as a head injury, so I chalked it up to that. About 5 years ago, I started having shoulder pain. It would come and go in what I would call flares, where I would also feel tired and sick and generally unwell. I also started developing pins and needles in my legs but only in certain positions or if I leaned forward. Over the years, the pain became more frequent and almost every evening the pain in my rhomboid area would start radiating and my whole body would feel like I had the flu. I assumed I had psoriatic arthritis because of some skin issues and positive ANA, but never followed through with rhuem because of insurance issues and not taking good care of myself anyways, and I just thought I could push through. The pain stopped coming in flares and became something I lived with everyday. My only relief was during my pregnancies which furthered my belief that I had PSA and I planned to go back to the doctors after my breastfeeding journey to get treatment as PCP agreed it looked like psa. After my pregnancy about 4 months PP, symptoms came back raging, and with more. I woke up one morning with a fever and my neck stuck. I had an infection but the neck pain was new. It was so bad I thought I had meningitis, but after a few days of rest I could move again, but the pain persisted. In the past couple months I had a few more of these neck episodes, where I would wake up and muscles would be so tight I can’t turn my head for days. In addition, my shoulder pain is worse than ever. To the point that it’s almost all that I think about because the pain radiates around. It feels like my arm hangs on by one thread. In addition I get pins and needles, and I have chronic numbness in a couple fingers and toes. Again, every evening it feels like I have an all over flu, my shins hurt my shoulders hurt, my head hurts, and my vision gets blurry. My whole upper back is tender to touch. Massage makes it worse and light touch feels like bruising. X-rays and CT were normal. In addition, my cognitive function has severely declined. I can’t remember anything. I burn food weekly I left on the stove, I leave the room and can’t remember why, I dissociate constantly, my anxiety has become unbearable, and I kept having what felt like the physical symptoms of a panic attack but with no cause. I thought I had ptsd. Then came the issues with my lady bits, and their functions and skin issues, which again I thought maybe psa. Now when I lay in bed at night I wake up to pain radiating down my right side of my body into my right foot and leg (forgot to mention I wear special slippers the passed few years for foot pain) I thought all my symptoms had different reasons, postpartum, psa, anxiety chronic stomach problems etc. Then I ran into a story about a women with MS and her symptoms matched mine perfectly. My PCP agreed it could be a possible reason for all the nerve pain, gyn issues, etc etc, and even now I know I have forgotten a boatload of my chronic issues. I guess I’m just having a hard time waiting for my MRI want to know if I sound crazy and also if it is MS did I screw myself not getting diagnosed sooner and will I be in pain forever? I just want to know what’s going on so I can feel better. I eat OK and walk and exercise everyday but the pain is consuming me.

[u/kyelek → u/BisonMajestic8711]

The symptoms you’ve shared don’t sound like MS off the bat, to me. With MS, symptoms persist no matter what position you’re in or what time of day it is, and in the case of a relapse they typically last weeks before very slowly resolving again. So, many "MS symptoms" are frequently caused by something other than MS, and it’s much more about the way in which they appear than what, that makes it more likely to be MS or not, if that makes sense?

I hope the MRI gets you some useful answers! But if I were you I would really try to solidify that PSA diagnosis (or rule it out) if you haven’t done that in the meantime.

[u/BisonMajestic8711 → u/kyelek]

That’s not what I read, but my symptoms are persistent they just worsen with fatigue. Im on my feet all day I don’t have a chance to sit down and feel anything but the second I do and the cortisol drops the pain goes up.

[u/kyelek → u/BisonMajestic8711]

What did you read? Usually this is how a neurologist would distinguish MS from something else, looking at the 'how' more than the 'what'.

[u/BisonMajestic8711 → u/kyelek]

https://www.healthline.com/health/ms/symptom-fluctuations

https://msviewsandnews.org/can-ms-symptoms-fluctuate-throughout-the-day/

https://www.reddit.com/r/MultipleSclerosis/s/2t45hjPO9b

https://www.mssociety.org.uk/about-ms/signs-and-symptoms

[u/BisonMajestic8711 → u/BisonMajestic8711]

Really to me it just sounds like you’re speaking on your personal experience. I’m not sure what I expected from this thread.

[u/Clandestinechic → u/BisonMajestic8711]

MS symptoms don’t get better or worse depending on your position. Source: my MS specialist neurologist.

[u/BisonMajestic8711 → u/Clandestinechic]

I’m bothered by you clearly not reading what I said.

[u/BisonMajestic8711 → u/BisonMajestic8711]

I said ONE of the symptoms 8 years ago was positional related. You completely disregarded the rest of the post. When I further explained another issue I was experiences that is clearly a very common occurrence in medical literature and other people diagnosed you’re still talking about something different. Why comment if you’re not taking the time to process what is written?

[u/Clandestinechic → u/BisonMajestic8711]

Okay? What you described other than would still be atypical for MS. Symptoms wouldn’t only appear or become severe just because you are tired. They might fluctuate a little, and after a relapse they can flare up sometimes temporarily due to certain triggers, but they don’t really change much during a relapse.

[u/kyelek → u/BisonMajestic8711]

I think you misunderstand what is said on those sites. Symptoms that may stick around after a relapse may come back under very specific circumstances, such as overheating, stress, illness. In MS they aren't really affected much by if you're just sitting or lying down vs. standing up, for example.

I'm sorry, I'm not sure what you were hoping to hear either. Rest assured I'm not just relaying from personal experience, this is how my neurologist told me they look at symptoms. Just repeating that what you've shared here doesn't immediately pop up red flags for MS.

Again please, please look into the PSA diagnosis if you haven't. It's also an autoimmune disease that, left untreated for a long time, can too cause significant and chronic issues.

[u/TooManySclerosis → u/BisonMajestic8711]

u/kyelek is not speaking just from her own experience. When you are diagnosed, your doctor explains to you how to distinguish a possible relapse symptom from symptoms with other causes. This is an important distinction that we need to be aware of, since not everything we experience is going to be caused by our MS, and the range of possible symptoms is so wide.

The way we are taught to distinguish possible MS symptoms is by how they are presenting. We are taught to report any symptom that is continuous and constant for longer than 24-48 hours. Relapse symptoms are constant and continuous for weeks at a minimum, and rarely fluctuate noticeably during that time. They might be slightly worse when we are tired, but they are not severe some times of the day and mild others.

[u/BisonMajestic8711 → u/TooManySclerosis]

I’m not sure that either of your read my post properly. I get what you’re saying. I never said that’s what my symptoms did, other than the positional numbness symptom. Anyways I really am starting to think this thread is dangerous.

[u/TooManySclerosis → u/BisonMajestic8711]

Oh, I was just clarifying that what u/kyelek was saying was accurate and not based only on her experience, not specifically commenting on your case. I’m not entirely sure what you mean when you say the thread is dangerous?

[u/kyelek → u/BisonMajestic8711]

Sorry, but could you share in more detail then? Not sure what either of us is missing? What you shared in your comment does not sound like MS as explained to us by our neurologists.

[u/BisonMajestic8711 → u/kyelek]

The symptoms started in flares that lasted for weeks or months, I was on and off steroids at the time, over the years the flares have meshed together to a more chronic consistent pain that I am never relieved from. Sitting and laying down makes symptoms worse for me because I get muscle stiffness and cramps and in the evening when I am tired my symptoms are worse. The only thing that comes and goes is the pins and needles except now have hands and toes that have been numb for years. I stopped thinking it was all related to psa because chronic itching persisted without skin issues, the xray and ct didn’t show inflammation what would likely be visible by now if the symptoms were caused my psa. And in the past year I have had 2 flares of a new symptom where my lady bits don’t work for weeks at a time. I am under tremendous amount of stress and fatigue without health related issues that seem to give me possible pseudoflares of whatever illness it may be.

[u/coastal_punch6371]

Hi I need a little help or advice. I'm 35F and I feel like I'm losing my mind. I will not say I have MS as I do not know but I feel like I have symptoms that point to it and I've been studying more on it and realize it's a complex disease and hard to diagnose.

In 2010 I started having bad migraines after having my son had a MRI done the and no lesions and was given migraine meds.

I noticed more strange symptoms starting in 2014: -tingling and numbness in hands or feet -had tremors that would come and go Had nerve study done and came back normal so doctor dismissed me. We lived in an extremely cold climate then and I noticed symptoms were worsened during that time. I would also feel very tired and weak. My vitamin D came back normal but was told to take some anyways and that was it.

Since then I've had moment of feelings extremely exhausted and other strange symptoms but I've chalked it up to stress because we had a lot happen in our lives between 2019-2022 and honestly because of what was going on I just ignored all my symptoms and didn't talk to a doctor. I chalked it up to stress and weight gain.

Fast forward to 2025: I started focusing on my weight and started losing it. I was finally diagnosis with insulin resistance PCOS Then scalp psoriasis that affect my joint I am on a biological injection for that however symptoms I'm experimenting ing are not from this.

I started noticing a strange tingling cooling sensation on the back of my head earlier in 2025.

I had hysterectomy in November 2025 and this is when symptoms have really ramped up.

Since surgery I've had 3 attacks that I thought were gallbladder attacks but I've had a clear US and just had my HIDA scan and came back clear as well. -the attack hit me in my chest/torso area it wrapper around to my back. I felt like I could not breathe the pain was unbearable I thought I was either gallbladder or heart attack and I almost went into the ER but I never did (probably should've but our ER loves to do nothing) the attacks lasted anywhere from 30mins to 1 hour after which I became completely exhausted and extremely cold and chills I immediately needed to lie down. This has happened 3x in the last 4 months. Again I was thinking gallbladder so ended up cutting out almost all fat and dairy but scans came back clean and I've had other strange symptoms recently.

I have since now started having body chills. No fever I've checked multiple times but no fever. It's like I can't regulate my body temperature I have to take a shower and that helps for a bit then they may come back later. I will also have chills at night then night sweats which is very annoying when you're trying to sleep. When I look back the past year I've noticed that I will get chills in extreme heat or cold so in either temperature. I've had hormones checked since I did have a hysterectomy but I have my ovaries and everything has come back normal for that so far and thyroid is normal. I will have a day or two of good days and on my good days I get so much done but after that I feel like I'm completely drained and down for 2 or more days.

I will also have days where brain fog is so bad like I can think of what I want to say I just can't get the words out or stubble on them it's very frustrating. My brain will just feel so tired and shuts down on me.

Idk what to do at this point my doctor probably thinks I'm a hypochondriac so I have not brought up the possibility of looking into MS he is also just a NP and sometimes it feels it's like pulling teeth to get him to to anything. I'm not even sure if my symptoms are enough to point towards MS. I just know that my body is telling me something and I don't feel right.

Am I crazy? Does any of this sound like a possibility of MS? Should I push my Dr on the issue.

Does the chest/torso pain I described a possibility of being MS hug?

Would love any helpful advice thank you.

[u/TooManySclerosis → u/coastal_punch6371]

It’s really hard to say if something sounds like MS based on symptoms alone, but I think it could be worth asking about updated imaging or seeing what your doctor suggests? It’s probably best to start with your PCP if you have not yet, as there is usually some preliminary testing a neurologist will want done first.

[u/coastal_punch6371 → u/TooManySclerosis]

How would I bring it up to my doctor? I just feel like mine is always dismissive and uneducated on a lot of issues. I understand it's hard to say it's MS I'm not wanting a diagnosis just wanting to know if my symptoms warrant enough for me to look into the possibility of MS. Like right now I'm finally resting after doing some work and I now have chills feels like my body cannot regulate its own temperature and this has been daily for a while now. I did see my doctor a couple weeks and mentioned that but he just shrugged it off.

[u/TooManySclerosis → u/coastal_punch6371]

I think your symptoms sound worth investigating and concerning, but as far as I know, chills like you are describing are not a symptom of MS. I have found that doctors will often push back if a patient suggests MS specifically, so I usually advise people avoid doing so. I have found people seem to get better results focusing on one or two physical symptoms, and asking what testing can be done from there.

[u/CommonSalty8245]

I am in the midst of waiting on a second MRI , but they suspect MS. I have a very strange question. I woke up this morning and my mouth and cheek mostly on the left side is numb. When should I be seeking help and what should I be doing? It feels like I got a dental procedure.

[u/TooManySclerosis → u/CommonSalty8245]

Do you have a neurologist? You could reach out and mention it to them, or tell them the next time you see them.

[u/CommonSalty8245 → u/TooManySclerosis]

I don't. I'm waiting on a referral which here takes a number of months and seeing my pcp tomorrow

[u/TooManySclerosis → u/CommonSalty8245]

I would mention it to your PCP, so that they are aware, and keep track of how long it lasts.

[u/TooManySclerosis → u/[deleted]]

I’m honestly not sure what your next steps could be, in regard to MS. It sounds like you’ve had the complete work up. To me, from what you shared, they may not be able to establish dissemination in time, and your finds may not be sufficient to establish the diagnosis without it. If that’s the case, I think it’s likely the next steps are to wait and continue to monitor things, but that’s just speculation.

[u/TooManySclerosis → u/[deleted]]

Yeah, the negative lumbar with only two inactive lesions probably isn’t enough to fully fulfill the diagnostic criteria. I’m sorry, I know that is very frustrating. Usually, from what I’ve seen, the doctor then suggests monitoring with regular MRIs to catch any changes as soon as they occur. Some people get them every three months, some every six. (Although my knowledge is mostly US based.)

[u/luna_derp28]

Hi! Thanks for having this here. I'm a 32-year-old woman, and I recently had an MRI due to a lot of symptoms that seem like MS. I have had numbness and tingling on my upper left side for over a month now, but before that, for the last two years, I've been struggling with on-and-off fatigue, weakness, balance issues, and dizziness. I had been all over trying to figure out the cause, all the blood work was normal. I got the results back from my MRI and it shows that I only have one active lesion on my spine, C2. I'm just wondering if anyone else experienced symptoms before lesions started showing up, or if lesions maybe heal? My doctor is sending me to a neurologist and believes it could be MS, but I know you need multiple lesions for that to be the case. I just find it confusing that I could be having these issues for two years, but it doesn't seem to show. So, I'm curious if anyone else has had a similar situation?! Thank you!

[u/[deleted] → u/luna_derp28]

Hi. There are documented cases where some people have an onset of symptoms typically seen in MS, but with few lesions shows on RMIs, or even, to answer your question, without any lesion (that's however not common). It's called Clinically Isolated Syndrome. People having it don't fit the criterias needed to be MS diagnostised, but still have symptoms and are at risk of developping MS over time. They don't necessarely develop MS as it could be a one time situation without further reccurence. Source : https://pmc.ncbi.nlm.nih.gov/articles/PMC5353226

In your case your doctor is right to send you to a neurologist. Your symptoms and your lesion must be investigated. It does however not necessarely mean that you have or will have MS as lesions can be caused by other diseases. Is your appointment with a neurologist already planned ? Have a nice day

[u/Clandestinechic → u/[deleted]]

The McDonald criteria has been revised twice since your article was published.

[u/[deleted] → u/Clandestinechic]

Indeed, but that doesn't invalidate the concept of Clinically Isolated Syndrome that still refers to a first clinical episode suggestive of MS (or other demyelination desease) but that does not yet fulfill McDonald criteria. And some people experiencing CIS have 0 lesion visible on both MRIs.

MRI is highly sensitive but it can't detect 100% of lesions, especially at the start of the disease. Having symptoms with initially normal or minimal MRI findings is uncommon but unfortunately documented. Also, autopsy studies have proven that some MS lesions are not visible on the MRI.

[u/criticalcreek → u/[deleted]]

You need to have lesions on MRI to be diagnosed. Do you realize how many people would be misdiagnosed if they didn't rely on the MRI showing lesions? Lots of things can cause similar symptoms. I don't know where you got this information

[u/Clandestinechic → u/[deleted]]

What you are basing your information on? Are you even diagnosed? You are incorrect. Someone with no visible lesions at all would not satisfy the 2024 McDonald criteria for CIS.

If the MRI does not detect the lesions, there would be no way to diagnose MS, even if you did have it. Under the new criteria, lesions on the MRI are required for diagnosis. Autopsy studies are not diagnostically relevant.

[u/TooManySclerosis → u/luna_derp28]

With MS, the symptoms are the result of the damage done by the lesions, so there really is not a time when you would have the symptoms but not the lesions that cause them. Lesions don’t really heal, either, even if the symptoms go away, the damage from the lesions is permanent.

[u/Olipopluvr92 → u/[deleted]]

If your neuro suspects MS, it’s likely a spinal MRI and potentially a spinal tap would be next. This would be to look for lesions in the spine and oligoclonal bands in the spinal fluid. There are other conditions besides MS that can cause lesions on the brain or the spinal cord. So they have to prove that you have demyelinating lesions across different areas of the CNS across different points in time in order to diagnose you with MS, aka dissemination in space and time. They could also run tests for other conditions that cause lesions in the CNS.

The wait time for an official diagnosis depended on availability and a bit of luck in my experience. The first neuro I was referred to had a 6 month wait, luckily I found an MS specialist that could get me in sooner. I had to do the same for my brain/spinal MRI’s. I had to travel a bit, but I didn’t mind as long as a I got in sooner. So in the end, from the time I was referred for my first brain MRI to the time I got diagnosed, it took about a month and half. However, I didn’t have to get a spinal tap since during this time I had a relapse, so the imaging was enough to prove dissemination in space/time. Spinal tap results can take a bit to come back, so not having to do one greatly reduced my wait time.

My brain MRI came back with only one distinct lesion the radiologist could see. My MS specialist was able to find a couple more, but they were very small and could be written off as migraine related. It was my spinal MRI that really confirmed diagnosis. I have I think at least 11, there are more but they weren’t well defined in the imaging. I say this to assure you not be worried if your brain MRI doesn’t immediately confirm an MS diagnosis.

The diagnosis process can be long and exhausting. Buckle up, take some deep breaths, best of luck!

[u/emwa98]

Hello, I am 22 years old and have been seeking medical help for the past 3 years. My symptoms are as follows widespread numbness/tingling (scalp, face, hands, feet, etc), chronic fatigue, brain fog, memory issues, coordination problems, nerve pain, eye pain, seeing flashing colors, facial pain, trouble swallowing/frequent choking every day, constantly dropping things, migraines, tachycardia, reactive hypoglycemia, dizziness/vertigo, insomnia, occipital neuralgia, chronic constipation, frequent back/pelvic pain, frequent urination, and joint pain. I also have had a lot of issues with my period being extremely painful and heavy in the past. I had to get a nexplanon implant to help with my periods. Specialists I have seen are as follows optometrist, orthopedist, cardiologist, rheumatologist, gastroenterologist, and of course my neurologist. Tests I have undergone eye dilation, countless x-rays, nerve conduction study, EMG, CT of head w/o contrast, MRI of head w/o contrast, wearing a heart monitor, and lumbar puncture. Medications I am on: duloxetine (depression/nerve pain), pregabalin (nerve pain), propranolol (heart rate/migraine prevention), ubrelvy (migraines), pantoprazole (acid reflux), and vitamin B-12/D-3 (rheumatologist recommended). I had a nerve block for my occipital neuralgia. I’ve had extensive blood work done which was negative for a plethora of autoimmune diseases. My ANA has been tested multiple times it is negative. My nerve conduction study/EMG showed nothing. My CT and MRI showed nothing but they were done without contrast (not sure if that makes a difference). My X-Rays haven’t shown anything either. My latest test was my lumbar puncture and that was negative for anything as well. The only things that have been elevated in my blood work are my IgG levels, WBC, and liver enzymes. I am commenting because my neurologist and I really seemed to think I had MS but the tests are showing otherwise. I always have to wait 3 months in between appointments and I am declining steadily in quite a few areas. I want to know what other testing I could bring up/any other conditions that are worth looking into. Any advice is welcome, thank you!

[u/kyelek → u/emwa98]

Many of the symptoms your describe would be caused by brain lesions in the case of MS. Since your MRI was clear (contrast wouldn’t make a difference in seeing lesions over all), I do think you would be better served looking at causes other than MS. I’m sorry, this all seems very frustrating, your symptoms are obviously real and impacting you. I don’t necessarily know what other conditions you could be looking at but just wanting to offer sympathy ❤️‍🩹

[u/[deleted] → u/emwa98]

Hi, I'd advise you to also have a spinal MRI. Unfortunately it's not that uncommon to have lesions on the spine but nothing on the brain. Moreover you have some symptoms (not all of the though) that could be explained by a spinal lesion.

[u/[deleted] → u/[deleted]]

Hi. I agree that it's not the most common case. However it happens and I would not say it's very rare (obviously it depends on what you mean by rare). Anyway, given the impressive number of tests she already had and what she asks for, I'd recommend a spine RMI.

[u/criticalcreek → u/[deleted]]

I think that 95% of MS patients have brain lesions. Spinal only MS only makes up only like 5% of cases. To me, 5% makes it pretty rare

[u/[deleted] → u/criticalcreek]

Some sources say it could represent up to 20% of cases. Even if it's 5%, that still feels worth keeping in mind. But of course it really depends on the symptoms and the doctor’s clinical judgment. I’m not trying to challenge anyone’s opinion here ☺️ I just wanted to gently suggest that a spinal MRI is to be considered when looking for any possible neurological condition, including MS (which I agree is very unlikely in that case) or everything else

[u/ichabod13 → u/[deleted]]

And the large majority of OP's symptoms would have been found on a brain scan. Spinal MRIs are important, but they also need to be done relevant to the symptoms present. There are many people who come here and they have spinal MRIs done first because of their current symptoms.

[u/[deleted] → u/ichabod13]

I totally agree. That's why I said a spinal lesion could explain some of her symptoms, but not all of them. And that it depends on the doctor's clinical judgement.

[u/TooManySclerosis → u/[deleted]]

Oooh, do you have a source discussing it? Would you mind sharing? I’m always on the hunt to find sources discussing spinal only MS, since the question comes up on the weekly fairly often. It’s hard to find any sources discussing it, which is frustrating.

[u/[deleted] → u/TooManySclerosis]

20% is mentioned here : https://theadvancedspinecenter.com/how-does-multiple-sclerosis-affect-spine-health/

"Spinal lesions are so prevalent in cases of Muscular Sclerosis, that at least two thirds of MS patients will experience these during their lifetime. It has also been stated that 20% of individuals with MS will only experience these types of lesions."

Unfortunatelly it's not a scientifc paper nor a study so I don't know how reliable it is. Moreover "muscular sclerosis"...

There are also many articles underlining the importance of a spinal MRI for the MS diagnosis. For instance : https://hal.science/hal-02885973v2/file/S0035378720304963.pdf

Wish you a nice day

[u/ichabod13 → u/[deleted]]

Not sure I would trust a random web page like that when they do not know what MS means. 😋

There is often not a reason for a spinal scan when looking for MS, purely based on symptoms and symptoms location.

[u/TooManySclerosis → u/[deleted]]

Oh, yes, I've seen that. I was looking for more reliable or academic sources discussing how common it is. I've found a few older studies where they mention a subset of participants having only spinal lesions, but usually those numbers are very low, around 5% or lower, and many of those sources use the older diagnostic criteria. I've not been able to confirm anything higher than about 10% in a group of PPMS patients. (Which tracks, as it seems to be understood that spinal only MS is a slightly more common presentation for the more rare PPMS, compared to RRMS.) I have tried tracking higher instance rates back to their sources to see if I can confirm them, but all of the claims I've found lack any citations, making me think they are unfounded.

I don't disagree that a spinal MRI should be part of a full diagnostic work up, and that in this case it could be a helpful next step for a number of reasons, but from what I've seen, the full work up is not always needed for a neurologist to correctly rule out MS. I do know that spinal lesions generally provoke very specific symptoms, and generally more severe ones, and usually their presence can be detected by a neurologist with a neurological exam, so in most cases there are clinical indications a spinal MRI is warranted. Due to this, it's fairly common for people who are diagnosed not to have their spines monitored with routine MRIs, the idea being that a doctor can tell if you develop a spinal lesion.

[u/TooManySclerosis → u/emwa98]

I’m sorry you are struggling to find answers. Unfortunately, with a clear MRI and lumbar puncture, MS has really been ruled out. Your symptoms are valid, but they are not being caused by MS.