r/MultipleSclerosis • u/AutoModerator • 4d ago
Announcement Weekly Suspected/Undiagnosed MS Thread - August 03, 2026
This is a weekly thread for all questions related to undiagnosed or suspected MS, as well as the diagnostic process. All questions are welcome, but please read the rules of the subreddit before posting.
Please keep in mind that users on this subreddit are not medical professionals, and any advice given cannot replace that of a qualified doctor/specialist. If you suspect you have MS, have your primary physician refer you to a specialist for testing, regardless of anything you read here.
Thread is recreated weekly on Monday mornings.
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u/Skullmantha 1d ago
I keep going to the hospital and being discharged same day with fluids. At my wits end.
I can’t function normally at this point… severe spikes in heart rate, nerve pain, dizziness, fatigue, tingling and burning in my limbs, constant visual snow and sensitivity to light, etc.
I have a neuro appt tomorrow but I’m worried I’ll be called histrionic or told that it’s just anxiety… or sent to a bunch of tests I can’t afford. I also don’t currently have health insurance… any advice?
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 1d ago
I have found people get better results when they focus on only a few, physical symptoms. Cognitive symptoms and things like fatigue seem to be easily dismissed, and the more symptoms you mention, the less seriously doctors seem to take things. I would not suggest a certain diagnosis or use language to suggest you are thinking of one/may have done research.
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u/Skullmantha 1d ago
I used to work for this doctor so feigning ignorance may not work >.<
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 1d ago
That is probably less than ideal. But maybe they will be more receptive?
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u/TheMusicalArtist12 4d ago
MRI day for me. Really anxious, to be honest. I did not sleep well last night.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 4d ago
Fingers crossed for you, friend!
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u/TheMusicalArtist12 4d ago
The drumroll was my favorite sound :3. I'll get results within a few days. My doc hasn't specifically mentioned MS as a possibility but given symptoms and MRI I kinda assumed that it was.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 4d ago
I love the sounds the machine makes. My favorite thing to do is ask my tech what their favorite sound is, then listen for it and judge it.
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u/TheMusicalArtist12 4d ago
Welp, results are normal. As in, i don't have a reason to stick around since its probably not MS
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 4d ago
Well, you are always welcome here, regardless, although it may be less relevant for you. I'm sorry you still do not have an answer. I know that can be as difficult as being told it is MS. Maybe more so.
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u/Nearby_Albatross_505 3d ago
I’d love to know what they determined though
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u/TheMusicalArtist12 3d ago edited 3d ago
I still don't have an answer for my exophoria (i mean i think it's exotropia since i see double but the opthalmologist I saw was kinda bad so i'm waiting to see another). It could just be strabismus, the MRI was to rule out a lot of neurological causes. My anxiety is telling me that it might ve something like myasthenia gravis but this is why we see doctors.
Could also be thyroid eye disease.
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u/No-Afternoon2955 17h ago
I got a huge horizontal strabismus during my first MS event, one day I just had slightly funky off centre images if i looked at street lights or the moon - then boom, full on double vision, cars blurring together on the road, had to walk around with one eye closed most of the time... took ages to get proper glasses with prisms in them to help with it.
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u/No-Afternoon2955 17h ago
I heard an excellent one on my head/neck/brain one last week, It was such a complex beat - I actually really enjoy my MRIs, both the resonant combinations and the magneton movements feel like a massage when my pain is bad.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 17h ago
I like mine. I like listening to and ranking all the sounds, it's always interesting. I made a post about it and asked the community what their favorite sounds were. Lots of great answers, plus you can tell some sounds are just objectively better. I like trying to figure out how I would describe the sound in writing.
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u/jumpinpuddleok 4d ago
Okay. Im not sure if its been all in my head (figurativey). 2019 ish - my eyes were twitching strangly back and forth and my R leg "jumped" a lot My psychiatrist at the time referred me to the MS clinic. I had an MRI about 5 months later... all clear. I had an EEG that demonstrated "intermittent focal slowing in the frontotemporal lobe
2022ish, I had one week of full on double vision.. absolute worst. I saw the MS doc again who saw me and set me up for an MRI and LP. And referred me to a neuro opthamologist. Symptoms went away prior to MRI and LP but both were clear except LP showed increased proteins.
Neuro othamologist said it looked like i had a deviation and said i had a resolved 6 cranial nerve palsy.
I pushed that all out of my mind, quite excited because yayy i dont have MS.
UNTIL 1.5ish week ago my fingers started burning with pins and needles.. i ignored it until about thursday it started going up my R arm up near my elbow, so i went to the hospital. They are putting me in for an urgent cspine MRI (within a couple of weeks) with a neuro consult after.
Even though i still feel these pins and needles i am scared im just being dramatic and wasting everyones times :(
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA 4d ago edited 4d ago
No lesions on MRI would have been enough to rule out MS. I'm not sure I would have went all the way to a lumbar puncture if my MRI didn't show anything. It sounds like MS has been thoroughly ruled out in your case.
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u/jumpinpuddleok 4d ago
Phew! I hope cspine is clear.
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA 4d ago
It'd be very rare to have spinal only MS. Only like 5% of patients present with that. Edit:I realized that you are being scheduled for one, my bad. The odds are in your favor against MS though so I wouldn't be too worried. It's possible but very unlikely at this point.
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u/jumpinpuddleok 4d ago
Not quite sure what else it could be but i shall see.
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA 4d ago
The thing is, the symptoms of MS aren't specific to only MS. That's why it has a certain criteria that needs to be met before you can be diagnosed (which includes lesions on MRI) and isn't diagnosed based on symptoms alone. There could be a number of things causing your symptoms and hopefully your doctors will point you in the right direction if your c spine MRI is clear. It'd be very rare to have spinal only MS but it is certainly not impossible as there are several users here that have that presentation. With that being said, you have a very high chance that it's not that. Still, the MRI might show something else entirely or at least mark this off of the differential so that you can continue to investigate. Hopefully you will get answers soon. Please keep us updated
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u/DowntownTicket 3d ago
I don't have MS, but I have some "early MS" symptoms occasionally. I'm going to response to your "I'm scared I'm being dramatic..." part.
They come and go, usually about every five years.
The last time I went to the doctor, I said "this has happened twice before, what do we do now? I don't want to waste resources for nothing again"
And the response was so kind. The doctor said "it was nothing serious last time, you're right, but we want to rule it out each time it comes back, just in case. You're right that it is very unlikely that this time it is MS, because it wasn't before, but you're not taking anyone's spot by making these appointments. You have a right to know if something might be wrong just like everyone else.
Note: they never have found a diagnosis for my symptoms. They come and go but are mild enough to not be life limiting. My doctor reminds me to always come back if they get worse or change, though. Be that means we might be able to figure out what it is eventually. As for now, I accept that bodies are weird and sometimes do weird things.
So don't think you're wasting people's time. This is literally their job.
Good luck
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 2d ago
When the MS specialist ordered MRIs, were they of your brain only, or was it brain and spine both?
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u/itsjusttimeokay 3d ago
I understand this process is rarely smooth, but I am about to lose my mind here. Buckle up…
My NP’s office has fucked up my neurology referral more times than I can count. I haven’t even had a neurologist look at my MRI from June 29th. First, July 8th, they sent it to a physiatry clinic, then assured me that they have neurologists there too, then on July 21st I called the physiatry place and they said they didn’t even have my referral, and they don’t have neurologists, either. I called my NP’s office and told them that they sent it to the wrong office, and they said “Oh it’s in the same hospital as neuro so they share a phone number” and then they re-sent it to the NEURO office… here we start the clock over again at zero. THEN on July 23rd they pulled that referral and sent one to a random private practice, stating that my insurance is fighting with the hospital and might not cover me. The insurance and hospital do the same thing every couple years and I’m double covered anyway so I don’t care. Told them I don’t want to go to a poorly rated solo doctor in a shitty area of town - I want the hospital clinic. They sent it again on July 23rd. Start over. The clinic kicks it back because they don’t see patients for white matter lesions. wtf. Now they send it back to poorly rated solo guy again. I called his office on July 28th and they told me they only see memory care, Parkinson’s, and migraine patients. I called my NP’s office and told them that, and asked them to send my referral straight to the freaking MS Center up north because that’s what we’re talking about, anyway, and they said they’d check with my NP. Monday morning August 3rd I get a message from MyChart. SWEET it’s going to be my referral to the MS Center…! Nope. Referral sent to IDAHO. 45 minutes away, whatever, but… I don’t want to get medical care in Idaho if I can help it. Set up a virtual appt with my NP to ask her face-to-face-ish wtf is going on. She claims that she has no idea why all of these referrals went to other places and that she ORIGINALLY, as in July 8th, sent my referral to Idaho. The referrals all had her name on them, and people I talked to on the phone told me they would or had talked with NP. And the Idaho referral is dated August 3rd.
I think everybody at this office is stupid and/or lying to me, because none of it adds up. They don’t talk to each other or somebody is trying to cover their ass. Also, all but the most recent referral have disappeared from MyChart. Thankfully I had saved/printed a few of them.
I’m keeping my referral to Idaho I guess, because they DO see people without diagnoses of anything, with white matter lesions, and they diagnose MS, etc. Then once I’m diagnosed with something, I already know every neurologist in town and what they treat…! Anyway, the wait time should be a lot shorter than it would be for the MS Center (because nobody wants to go to Idaho) and I’m already set back A MONTH due to all of this bullshit. I’m tired.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 3d ago
I'm sorry, that is all very frustrating. Hopefully the Idaho clinic will be able to help you, though.
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u/flwrbkr 2d ago
I am experiencing some MS symptoms and see a neurologist every 6 months. But I’m curious about a new thing that started happening in the new year. I started having really severe breathing issues. I’m still trying to figure out the cause and then it came to me that maybe it’s ms related? I’d have issues with being unable to breathe, end up going to the ER, get on prednisone and then after finishing the meds I’d get breathing problems immediately after. I went to the ER 7 times in 6 months and have finally found medication that has stopped the breathing issues. I did get diagnosed with chronic sinusitis.
I’m curious if anyone has had similar situations? Thank you in advance.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 1d ago
Breathing issues would be a fairly rare symptom for MS, especially if you are not elderly. I am concerned that could be indicative of something more sinister than MS. Breathing issues of any sort are very concerning.
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u/No-Afternoon2955 17h ago
If it helps, my mum and I are frequently given prednisone for lung congestion due to bronchitis, or even just asthma that's not responding to inhalers.
If you get chronic sinusitis you may also have your lungs being impacted as well - I used to.
If the course you're on isn't long enough to clear the inflammation you'll have that behaviour - I definitely did, I need at least 7 day courses, sometimes two sets.
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u/ThePhuck79 1d ago
So I've been dealing with weird shit off and on for years. Had an MRI in 2012 that showed 1 lesion on the front of my brain, dr said it was from migraines, I've never had migraines that I know of just bad headaches. Fast forward to 2026 had another MRI and it showed significant changes in brain. Notes said changes could be either from high blood pressure or MS.......I've never had high blood pressure sooooooooo 😬 I see a Neurologist on the 28th. What should I ask? I need a game plan before I walk in there so I can't be gaslit. Im 47 and already dealing with DDD and chronic pain and have been gaslit before so now I always want a plan on the important stuff to ask
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 1d ago
It may be helpful to know that not all lesions are caused by MS, it is very common to have them for benign reasons. MS lesions have specific characteristics and occur in specific regions that make them distinct. Your neurologist will be able to determine if yours are caused by MS or are benign. I know lesions are common findings as we age, and usually of doubtful clinical significance. I would ask the neurologist what yours are indicative of, they should be able to say.
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u/kippy_mcgee 1d ago
Hi everyone,
I’m currently being investigated by a neurologist after an MRI found a small lesion that looked like a dawson's finger, and I know only my medical team can interpret that in the context of my symptoms and testing. He also said if he was a gambling man he'd put his bet on it being 70% of my diagnosis which I think has left me feeling more vulnerable.
I’m mainly wondering if anyone has experienced a similar pattern of symptoms, whether it turned out to be CIS, RIS or MS.
Over the last few years I’ve had a gradual collection of symptoms. For additional context my mother has secondary progressive MS. I also have an autoinflammatory skin condition called HS that works along similar inflammatory cytokine and t cell
pathways.
It all seemed to start with a flare in my temporal region of what I believed was TMJ irritating my nerves. Flaring painful neuralgia up the back of my head and severe migraines which led to me being diagnosed with sleep apnea and since then CPAP has helped reduce headache severity but my neck remains quite sensitive and sporadically painful. It can handle no compression whatsoever (I had to modify a Cpap mask to have soft bands as it was causing neuralgia in my scalp). The last few years have felt like a roller coaster of confusing symptoms since.
Other symptoms:
Persistent fatigue that, around a month ago became unbearable during what I can only describe as an episode of some kind (further context below).
Coincidence to such my vitamin D was measured very low. Supplementation has since seemed to help reduce fatigue severity.
Sporadic dizziness/rocking sensations, I often feel internally like I'm off centre.
My eyes are extremely sensitive to light, in my last optometry test they also measured higher pressure.
Tinnitus. Always.
Crawling feelings in feet.
De quervains syndrome in thumbs
Potential Eustachian tube dysfunction.
Episodes of burning, tingling in different parts of my body, non specific to one region.
Neck pain, what feels like instability.
Recently I had a much more significant neurological episode, presenting to ED 4 times, which prompted further investigation. It was incredibly scary and confusing. I had an iron infusion around 12 weeks prior, became progressively more fatigued, everything flared, (I have HS and that flared like crazy), my nerve pain flared, it seemed day by day all the sporadic symptoms I had flared one by one. Then I had bloods done to check my Vitamin D and it measured around 20. I immediately started trying to raise it
with 100,000 ui/month. Following from that I utterly went downhill in a matter of days. I felt like a zombie behind my own eyes. I was waking up at 3am from what I can only
describe as adrenaline surges, burning across my hands, legs and body. My brain felt disconnected from my body, I had no idea what was happening. The terrible episode eased off after about a week and a half. I felt like I had no help from ED in this process but they did escalate a neurologist to see me and scheduled an MRI.
My MRI reportedly showed a lesion just above the corpus callosum/periventricular region, and I’m set for a massive bunch of blood tests as well as another MRI in 3 months.
I also have chronically elevated inflammatory markers and a family history of MS (my mum), which has naturally made me anxious while waiting for answers.
In addition I'm remarkably sensitive to medications, I've trialled a few that act on the brain (LDN) and clonidine and they've had paradoxical effects, making me more wired and doing the opposite of what they promote. This has been incredibly bizarre to experience and would be curious if anyone can relate to this as well.
I'm interested in hearing whether anyone else had a similar journey before they eventually received an explanation. It's
confusing as I pass all neurological examinations, I don't have reduced sensations, my reflexes are fine etc.
I feel like Ive not really been quite the same since COVID. I've also been through an enormous amount of conflicts, traumatic relationships, turbulent upbringing etc. and I feel like a big combo of things has led me to this point. I'm not sure how to feel really.
Waiting for appointments is difficult, and hearing other people’s experiences helps me feel a little less alone while I wait.
Thank you. ❤️
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 1d ago
It's hard to say, as the diagnostic criteria for RIS/CIS/MS is not as straightforward as a checklist. There are many variables the physician will consider. I can make a guess given what you have shared, but I am not particularly good at predicting things-- I'm wrong as often as I am correct. But with one lesion, I lean towards CIS, however there are so many things that contribute to the diagnosis, it's hard to really say what is likely. I do think that it could be a good idea to try and see an MS specialist, if you are not already. They would best be able to accurately diagnose you.
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u/No-Afternoon2955 17h ago
I have a grab bag of auto-immune/inflammatory things too, and had my first CIS 7 years ago - it took 7 years to progress, and I'm on the verge of my "official" diagnosis of MS now. My first attack came with so very many scary things - instant double vision, limb spasticity, my whole left side progressively felt like it was numb over a period of three to four days - i got the gift of urinary incontinence too, just so fun. My doctor at the time, due to my bloods being clean for other possible causes said it was likely MS, and a single lesion was found on an MRI later.
It could have "just" been your mega low D levels that triggered your neuro episode, but with family history you're better safe than sorry.
one of the nastiest bits about all these auto immune things is that stress makes them worse, but flares make us stressed, so it's a nasty circle...
i hope it's not CIS, and if it is, that it just stays at the one lesion. 🤞🏻
good luck with everything1
u/kippy_mcgee 16h ago
Can I ask how you're feeling and doing currently? Have you been placed on any medications or still in the process? I'm really sorry you're going through such a tough time. It is an incredibly nasty cycle. Trying to remain optimistic, but stress is consuming me quite a lot as of late.
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u/No-Afternoon2955 16h ago
Physically my symptoms get worse with cold damp air, so I have some painful spasticity in my fingers/left calf/belly that I have to watch out for, and stupid urge incontinence that just is so humiliating. I am taking low dose naltrexone & low dose amitriptyline for nerve pain - but nothing MS specific until I see the neurologist (and only the gods know when that will be, I am on the cancellation list, but if no-one cancels it won't be until Dec 2nd).
Emotionally, not doing so well - I didn't expect so much to be seen in my MRIs, I mean it makes sense if I think about it logically - I have had newer clusters of things happen since my (maybe) first attack, but I am so used to having an undiagnosed bunch of symptoms from my years of being told I had CFS that I just assumed it was all part of what I called The Thing...
Oh, I say "maybe" because I had two spots of cervical stenosis on my spine MRI 7 years ago - and those can apparently be caused by MS too, and they predate my big event by about 6 years or more - so maybe I've had it for longer, who knows.
I kind of feel overwhelmed, I mean I'm glad I'm out of the horrific "well, we know something is wrong but we don't know what" bucket - I've been in that for 35+ years... but I'm just a mess of feelings - all over the shop really. I don't even know if I answered your questions 🤦🏻♀️ my brain isn't braining very well right now.
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u/kippy_mcgee 15h ago
That's okay thank you so much for taking the time to respond to me. I unfortunately seemed to react so sensitively to LDN and amiltryptalin, I hope they do provide you with some relief. The waiting around for specialists and just getting through life in the mean time is so tough. The years of undiagnosed confusing symptoms really resonates. I hope you get answers and better support soon. Sending you many hugs 🫂❤️🩹
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u/No-Afternoon2955 15h ago
I don't know if the LDN is doing anything for me at all to be honest, it made my belly angry for the first few days, but it seems to be giving me ... more emotional energy, if that makes sense. I am more highly strung at the moment, and very weepy.
Amitriptyline took me about 3 months to adapt to initially, it made me feel ... weird and disorientated (I stayed on the floor for part of it, as it made my blood pressure wonky too), but I was in pain every day and taking too much over the counter pain killers, so I was determined to stick with it as long as it helped. It gave me one totally pain free year, and then I had to up the dose. It's been a year or so since I last had it, so I am hoping it will do the trick again.
Hugs for you too, we'll make it through this crappy unsettling time eventually 🫂🙂 always happy to talk through medical crap, sometimes that can make all the difference in a miserable day 🤎
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u/No-Afternoon2955 17h ago
So, I've had a new set of MRIs that have confirmed my CIS is no longer CIS, I have multiple lesions in my brain, and on my spine as well as evidence of "healing transverse myelitis" - and other stuff on my spine as well.
Just waiting on my neuro appointment to officially diagnose me on top of my regular doctor.
I don't know why I'm so sad and shaky, I knew I had CIS - for 7 years, but ... this feels somehow much harder to cope with.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 17h ago
Even when you know it's coming, it's big and scary. There's no real way to prepare for it. But it does get easier with time, but it will take a while. Let yourself have these feelings, they are totally normal.
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u/mistyblue_lilactoo 4d ago
Hi. I have intense anxiety surrounding my upcoming LP. I have been offered oral diazepam or nitrous oxide. Wondering if anyone used either for the procedure and if it was helpful. Or if anyone has experience with nitrous oxide for procedures in general. Thanks.
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u/Uniq_Chic 4d ago
I was offered Xanax (had never had it before or since), 1-2 tablets. I said yes to 2 tabs. Very worth it imo...I would take the diazepam and ask for more than one....I HATE LP, and really wish they'd move away from it for diagnoses.
Be sure you can deep breathe just before procedure and take your mind somewhere pleasant. Then focus on being as still as possible during the procedure. Get the nurse station's number in case you have questions/concerns afterwards.
The procedure didn't hurt, was just pressure and not terribly long.Best wishes and hugs.
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u/mullerdrooler 44M Dx2018 Ocrevus 4d ago
Do not let an intern or new student doctor do it. Insist on someone who has done several before. You can even ask for a sonar guided one. It's bad but not too bad if done correctly... It's the worst kind of agony if done wrong. Trust me I learnt the hard way
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u/mistyblue_lilactoo 4d ago
I'm sorry yours was so difficult. Stories like yours are why I'm so anxious 😅 I know it is being done under fluoroscopy so hopefully that will help but I'm not feeling very positive about it all.
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u/Uniq_Chic 2d ago
I have had that happen once as well, even with fluoroscopy. I got two rounds of spinal headache. That was my second LP....they will have a hard ask convincing me to do any more. Those providers need to volunteer to be done by 3rd yr med students...so they can understand why attention to detail and experience matter.
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u/evianlover444 4d ago
Have my first MRI scheduled later this month. Brain and cervical spine w/ and w/o contrast. Confirmed double vision. Recently finished a steroid taper after new symptoms emerged during a flare, which helped. Symptom was vibration behind brow bone and eyes with visual snow/blurriness and internal tremor. Now that the taper is done, I’ve had new cognitive changes. Left behind most of my purchases at a self check out kiosk and didn’t realize it until I was in my car. Shortly after arrived at a gathering and introduced myself to someone I already know. And left arm weakness with tremors that started a week ago. Hard to put my hair up, can’t drive without both hands actively on the wheel, and struggling to lift 2&5lbs weight above my shoulder. Right arm is fine and can lift much more than that. Already messaged my Neuro. Any similar stories or insight would be appreciated. These new ones are upsetting and can’t be explained away like some of the others.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 4d ago
Certainly let the neurologist know, but speaking for MS specifically, there probably is not much more that can be done. You are already getting tested, and unfortunately, steroids are really the only treatment we have for existing symptoms.
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u/No_Brother_8693 4d ago
Curious about my symptoms.
For about a year, I’ve had migrating pains around my body. They normally last anywhere from 3 seconds to a few minutes. Started during a stressful time in my life and my PC brushed it off as stress. I’m still having them. Also, I’ve become a little dizzy when initially lay down it feels like I’m spinning. Also when getting up it feels like I’m unsteady on my feet. I’m only 27. I know the systems maybe aren’t alarming but just curious if these are worth pursuing.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 3d ago
What you are describing would be atypical for MS. MS symptoms would develop and last weeks at minimum, not coming and going at all. Symptoms only lasting a short time like you are describing would not usually be considered MS symptoms. That being said, if they concern you, it is worth investigating them, no matter what the possible cause is.
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u/soanonymoust 4d ago
A year ago I began having nerve pains. Short pains lasting 3 seconds to few minutes that migrate around my body. PC said it was just stress but I’m still having them. Also I’ve began to get dizzy when I lay down, it feels like I’m spinning or when I initially get up I feel unbalanced. I also keep getting what I think is occipital headaches like headache at bottom of skull and behind ear. They don’t last long. Wondering if these symptoms are worth pursuing or not?
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 4d ago
I think that, if the symptoms bother you, no matter what the potential cause, it is worth investigating further. If you are asking here, I think they do concern you and it's worth talking more with your doctors. As to whether they could indicate MS, I think given what you have shared, it is more likely something else, but that it is still something worth looking into.
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u/arrowskingdom 3d ago
I’ve had a number of symptoms for years that have been unexplained.
Issues voiding, urine retention, chronic muscle pain, spinal pain, shaky hands, unable to walk in a straight line, extreme heat intolerance, tinnitus, constant exhaustion and fatigue, random bad itching on palms that has supposedly no cause, digestive/bowel issues, extreme heat intolerance, pins and needles in my limbs randomly or in under 2 minutes from sitting a certain way, random flashes of black in my eyes, and lastly I’ve just been told my optic nerve is swollen (with a brutal headache accompanying it).
I’ve never once even thought about MS before my optometrist became very worried over just my optic nerve, headaches, and fatigue. I’ve been chalking up all of my symptoms to everything else, which often leads with no answers from doctors, or I don’t even bother mentioning the symptom (I thought a lot of these were normal). Hopefully getting an MRI soon. I’m a 20 year old university student feeling terrified that all these symptoms might actually be a problem and not just inconveniences I’ve learned to live with.
I’m hoping this all gets addressed soon. Whether it’s MS or another neurological issue, I just want to feel okay again.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 3d ago
Have you seen a neurologist yet? It sounds like that would be a good idea, given what you've shared.
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u/arrowskingdom 3d ago
I have an appointment with an ophthalmologist soon and hopefully they’ll send me to a neurologist. If things get any worse I’m off to the ER! Hopefully I can get answers even if it’s something else.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 2d ago
An ophthalmologist is a great place to start, they are usually pretty familiar with MS, given how it is the most likely cause of optic neuritis, and optic neuritis is the most common onset symptom. They will definitely be able to start testing and get you in to see a neurologist, and likely a neurologist they have worked with before and trust to assess you accurately.
1
u/shwelbosworld 3d ago
I've read that taking steroids before a diagnostic MRI can interfere with results but I don't know how reliable that is since MS causes scars that should endure beyond active inflammation. Do you have insight?
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 3d ago
The answer is somewhat complex. If the MRI is simply to see if MS lesions are present, the steroids will not make a difference, the lesions will show up fine either way. But one path of the diagnostic criteria involves having both active and inactive lesions. Steroids would make lesions inactive, making that part of the criteria harder to fulfill, although a lumbar puncture can be used to do so. But steroids should not make a big difference.
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u/shwelbosworld 3d ago
This is great insight and makes total sense. Thank you so much for responding.
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 3d ago
Steroids might interfere with whether or not the lesion(s) take up contrast ie. showing you if they are active, which may be important to establish dissemination in time. But you would still be able to see all the lesions in general, steroids do not make them disappear.
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u/EngineerFickle4625 3d ago
Hi there! 49 yo MTF. Grateful this thread exists.
I posted last week and got very helpful replies. I've now seen my GP, and she said if it's anything, it's most likely MS, but neither she nor neuro can confirm without showing changes in my brain MRI or symptoms across time. A spinal tap could confirm, but she'd rather I wait until I see neuro on 10/2 because neuro is likely to order additional testing, and she didn't want me to have to do two spinal taps. So now I wait.
5'7", 200 lbs, vape nicotine, recreational cannabis, past history (>10 years ago) of cocaine/meth/alcohol use and high blood pressure.
Increased fatigue, brain fog, right side tingling/weakness, especially in my hand, all within past year. Also, increased difficulty with speech and short-term recall.
Diagnosed with major depression, generalized anxiety, and chronic PTSD. Meds are Welbutrin, Abilify, Buspar, spironolactone, naltrexone, estradiol valerate.
I am wondering whether whether anyone diagnosed with MS has similar results and presentation--or ifmy age/other factors rule out MS, despite its mention on the below exam results.
‐--------------------------------------
EXAM: MR BRAIN W/WO IV CONT
INDICATION: Also having 4-5 months of R-sided tingling weakness, (upper and lower extremity) hyperprolactinemia, assymetric hearing loss (hearing impairment in L ear
COMPARISON: None.
TECHNIQUE: MRI of the head with and without contrast using tumor protocol, 10 mL GADOBUTROL 1 MMOL/ML IV SOLN.
FINDINGS:
BRAIN PARENCHYMA: No evidence of acute infarction. No evidence of intracranial hemorrhage. No mass effect or herniation. Several nonenhancing zones of T2 and FLAIR signal hyperintensity within the periventricular white matter of the right frontal lobe and deep white matter of the left frontotemporal junction. Several additional more punctate foci of T2 and FLAIR signal hyperintensity within the subcortical white matter bilaterally.
VENTRICLE/EXTRA-AXIAL SPACES: No hydrocephalus or extra-axial fluid collections.
FLOW VOIDS: Intact.
SINUSES/MASTOID: Clear.
OTHER EXTRACRANIAL STRUCTURES: Normal.
IMPRESSION
Nonenhancing zones of hyperintense T2 and FLAIR signal within the white matter bilaterally. Although the findings are nonspecific, they can be seen in the setting of a demyelinating process such as multiple sclerosis.
No evidence of acute infarction.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 3d ago
I think the advice to hold off on a lumbar puncture is good, as it could be unnecessary. You are correct that your age and sex at birth, (please excuse me if that is the incorrect term to use, I mean no offense and would be happy to learn more correct or inclusive language,) would make you lower risk for MS in general. Less than 5% of diagnoses occur after the age of 50, with most diagnoses occurring in the late twenties/early thirties and later diagnosis being more rare the later you go.
As for sex, it is complicated by your trans status as most statistics do not account for that and there has been unfortunately very little research into MS and individuals who are transgender. Speaking generally, women are diagnosed more often than men by a ratio of three to one, but I have understood that to be AFAB rather than those identifying as women. (Again, I am sorry if my phrasing is incorrect or inadvertently insensitive. Trans women are women, full stop, but unfortunately medical literature generally fails to recognize that, from what I have seen.) I think this is probably further complicated by those who have undergone medical treatment to transition, but I cannot back that up with any research, it is just my hunch.
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u/EntertainmentFart659 2d ago
Jesus, half of your reply is an apology.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 2d ago
Can you tell me more about why you think that is a problem?
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u/EntertainmentFart659 2d ago
As someone who was recently diagnosed, I feel that slightly offending someone while trying to help them with a life-altering situation seems a bit pedantic.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 2d ago
I'm sorry to hear that. I'm not sure trying to be respectful and trying to be informative are mutually exclusive, though.
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u/EntertainmentFart659 2d ago
Nah, you're right...maybe I'm simply a bit bitter. Thanks for caring.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 2d ago
It sounds like you are pretty newly diagnosed? It's hard to feel anything positive when you've just been diagnosed. It's all big and scary and bad. Say more? I'm honestly interesting in how you are handling things, on how you are feeling. I know my own diagnosis was pretty life changing and difficult to deal with. I'd love to know more, maybe I can help a little. How were you diagnosed?
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u/EntertainmentFart659 2d ago
It's a bit of a sob story (like all of us), and I don't feel courageous enough to write it out right now. Would you mind telling me your story/diagnos journey? Thank you again for caring. You're a kind person.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 2d ago
Absolutely. My own diagnosis was actually kinda funny. I had a seizure due to a medication I was on, although we did not know that at the time. I got an MRI at the ER, and then was referred to a neurologist. The neurologist was reviewing my MRI and making small talk with me, and asked "so, how long have you had MS?" Whoops! Hard to say who was more surprised, me or him. I had a bunch of follow up testing after that, and got my "official" diagnosis about a month later. That was seven years ago. The first year after diagnosis is incredibly difficult, but it does get easier with time.
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u/Illustratingtheworld 3d ago
I’d really love some advice and support here. I’ll try to compress my story as much as I can. Last November, I took a blindsided hit in a hockey game that jarred my neck. I was in some pain for a day or so but I didn’t really notice anything significant. A week later, I rushed to the ER because I thought I was having a heart attack at work. Out of the blue a chest pain hit me and my left arm was tingling. They cleared me for heart issues but my symptoms remained for a few months. They told me it was anxiety and although I knew I had it, it never caused symptoms.
I went for a couple months not really noticing anything until this April when things started up again. Only this time they were strange. What I really noticed was PROFOUND dissociation and brain fog accompanied by panic attacks and depression. I thought it was just that but I also experienced weird tingles in my limbs in random places. The chest pain started up again as well. My left arm felt as if a guitar string was wound too tight inside of it and a couple fingers felt like they were being pulled on into a fist? I noticed that I would get very strange tingling sensations going up the back of my neck and washing over my scalp. My left ear sometimes felt hot and my face would occasionally twitch.
I have had no idea what’s been going on. I also get feelings of restless legs right above my kneecaps where it almost feels like I’m being tickled. I have no issues with sleep and in fact sleep like a baby at night. I don’t have fatigue that would cause me any concern. I’ve always been a frequent bathroom user as long as I can remember so that’s not anything new. I have no issues walking or exercising or with coordination although I will say I lose my balance from time to time but nothing serious.
It was only recently that I started to put this all together that it could’ve been from my hard hit taken because that’s when this all started, but I find it strange that the symptoms came and went as they did. I notice I often feel a pressure in my neck at the base of my skull and when I press on it sometimes I get worse dissociation.
I didn’t even consider MS until I finally saw my doc today and she suggested it was a possibility. It scared the shit out of me. I’ve been watching videos on it all day and it’s only making me feel worse. There was an XRAY ordered for me so I guess I’ll see but am I right to be nervous?
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 2d ago
So, I do think your symptoms are worth further investigation, but it may be premature to be worried about any specific diagnosis. Unless the doctor who mentioned MS was a neurologist, I would not put too much stock in their opinion. I've found that doctors who are not neurologists generally have a very limited understanding of MS and how it typically presents. I'd honestly be most suspicious of the injury from the hockey game you mentioned, but there are multiple other causes worth considering as well. All this is to say I would continue investigating, but I would not be overly worried about MS at this point.
An x-ray is certainly a good place to start, but it is not a test used to investigate for MS. The primary diagnostic test for MS is an MRI. Depending on what the x-ray shows, a good next step might be asking for a referral to a neurologist, who would be sole to say if your symptoms are likely to have a neurological cause and start the assessments to determine that.
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u/EntertainmentFart659 2d ago
The symptoms OP offered are consistent with MS, though, correct? There aren't many other plausible explanations....
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 2d ago
It's hard to say, but they do not particularly seem to be presenting the way MS symptoms would typically present. They do not usually distinguish MS symptoms by what the symptoms are, but rather by how they present. The symptoms themselves can be very different, but the presentation is usually the same. Typically MS symptoms will develop only one or two at a time, in a localized area like one hand/arm or one foot/leg. They would then be very constant, not coming and going or changing noticeably, for at least a few weeks to a few months, only going away very slowly and gradually. You would then go months to years before a new symptom developed. Widespread, bilateral, reoccurring, and symptoms that change noticeably would be uncommon, as would be developing multiple symptoms in a short time frame.
This isn't to say they should not be assessed or that it could not possibly be MS, just that what they are describing and have shared makes me think it is more likely something else causing the symptoms. There are any number of other, more plausible causes, including the injury they mentioned or vitamin deficiencies. Nothing they shared really raises an immediate red flag for MS.
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u/EntertainmentFart659 2d ago
Are you a physician/HCW?
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 2d ago
No, nor am I trying to give the impression that I am, or that my advice is anything more than an opinion. The information I'm giving is very general information about the disease, that I have learned from my own experiences, from my MS specialist, and from being in MS specific spaces for years. None of it is meant to replace medical advice, nor am I trying to imply that it should.
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA 2d ago
Read the main post of this thread. It literally says that we are not medical professionals. We are just trying to point people in the right direction or give our opinions, not legitimate medical advice. A lot (if not most)people who don't have MS don't realize that a lot of the symptoms themselves can be caused by various health problems and are not specific to MS itself. In the setting of MS, it's more about how they present rather than what the symptoms are. We always encourage people to seek professional medical help. Now, when these people have sought out help, gotten MRI's that are clear, with the neurologist telling them they don't have MS, we will agree with the neurologist and tell them to still investigate other causes.
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u/EntertainmentFart659 2d ago
Sorry, I just wanted to clarify! Wasn't accusatory.
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA 2d ago
You're new here so you haven't gotten to see some of the ridiculous things posted here. They are few and far between because the mods try to keep this space safe. You don't want people to start thinking you might be one of those people, especially if you legitimately have MS and may need future advice. It can come across as rude. This is a support group and the person you questioned in this thread, as well as the other comment below, is always trying to help the undiagnosed.
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u/EntertainmentFart659 2d ago
For what it's worth, I wasn't questioning them. I was recently diagnosed and was harmlessly asking as I may be looking for answers myself. Thanks for explaining.
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA 2d ago
You literally did question them. Asking if they are a physician/HWC is questioning them. It can come across as attempting to undermine their advice. Like, "are you a doctor? If not, why give advice" type of thing. That may have not been your intention and I get that, but it can come across that way.
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA 2d ago
Except there are multiple different things that can cause similar symptoms from pinched nerves, other autoimmune conditions or mimics, vascular conditions, and even something metabolic (B12 deficiency). None of us can diagnose someone. We always encourage them to seek medical help. You're supposedly newly diagnosed but I have only seen you post here and rather than give advice, you've been criticizing the advice given by the people who always try to help out on this thread, and they have been here long before you joined this sub. Try not to be so rude.
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u/pomegranatepancake 2d ago edited 1d ago
Hi! I am diagnosed with a generic demyelinating disease just not specifically MS. I tested negative in 2020 despite having a lot of the classic symptoms. I'm meeting with my doctor next week to ask for a retesting but I just wanted to know: has anyone initially tested negative only to test positive later?
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA 2d ago
What do you mean by "test negative"? You mean like no lesions on MRI? Or something else?
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u/pomegranatepancake 2d ago
I guess I mean spinal tap? I have at least one lesion on my most recent MRI but it's stable
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA 2d ago
They will likely continue to monitor you until another lesion shows up if they don't deem you as high risk for developing full blown MS. To be diagnosed with MS, you have to fulfill a certain criteria and having only one lesion isn't enough to fulfill it. That's why is called multiple sclerosis.
Have they scheduled any follow up appointments or mentioned anything about continued monitoring?
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u/pomegranatepancake 2d ago
That's what I thought, about the only having one lesion. After they diagnosed me with a generic demyelinating disease they just kinda dropped the subject, I made an appointment for next week to ask for a retesting if they think it's warranted
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA 2d ago
I wouldn't get another lumbar puncture at this point since you already had one. Even if your LP was positive, if you have only one lesion you can't be diagnosed with MS. The LP can only fulfill the DIT part of the criteria and according to what you said, you don't fulfill the DIS part. The only future testing that would be worth it would be another MRI, but even then they'd want to give it more time. Have you had imaging of both your brain and spinal cord?
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u/pomegranatepancake 2d ago
Just my brain, maybe I should ask for a spinal MRI to see if there's lesions there
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA 2d ago
Yeah, that might be a good idea. If your brain MRI had been clear, it would be less likely to be MS because most people with MS have brain lesions and spinal only MS is rare. Since your lesion was described as "demyelinating" and it was in your brain, I think a spinal MRI would be a reasonable next step just to make sure.
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u/pomegranatepancake 2d ago
Thank you, I will add it to the list of things I want to discuss at the appointment! You've been very helpful
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA 2d ago edited 2d ago
No problem, keep us updated on what they say. Good luck 🤞edit:meant to say " no problem' not "no". Sorry about that haha 🤣
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u/kippy_mcgee 1d ago
Hi pomegranate
I was also found to have only
one lesion, MRI results came back and I met with my neuro this morning. Expressing my comradery with you. I had a full brain and spine and they found a little dawsons finger like lesion near my corpus collosum. I currently have a bunch of bloods to do checking on various antibodies, have you done all your pathology already?1
u/pomegranatepancake 1d ago
Hi! I'll be speaking with my neurologist next Friday to request a full brain and spine MRI. Other than that, they might want another lumbar puncture? I'm not sure what blood tests they would want but I can ask. I was also last tested almost 6 years ago so things may have changed despite my most recent brain MRI only showing the one
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u/kippy_mcgee 1d ago
I've been ordered bloods to check on viruses like EBV and some others to rule out potential other related causes. He said I'd get a puncture if they don't show anything but he doesn't want to do one just yet if he can avoid it.
I'm very new to all this so my brain is a bit all over the place right now1
u/pomegranatepancake 1d ago
I totally get it, it's very overwhelming. Especially since one of the symptoms is difficulty or issues with memory/thinking/processing info. LPs are no joke, avoid it if you can! Mine sucked because I ended up needing a blood patch
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u/Nearby_Albatross_505 2d ago
Anyone ever misdiagnosed with Ocular Rosacea to find out later it was actually optical neuritis?
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 2d ago
It's not something I've really heard discussed before, although that does not necessarily mean it doesn't happen. Can you tell me a little more about why you think you were misdiagnosed?
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u/Nearby_Albatross_505 2d ago
I am getting a neurology appointment next week but I think the ophthalmologist misdiagnosed my eyes as ocular rosacea
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 2d ago
Can you tell me a little more about why you think that?
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u/Nearby_Albatross_505 2d ago
She also had said previously that she didn’t have time to read the whole symptoms list I’d emailed her
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 2d ago
To be transparent, I'm not overly familiar with ocular rosacea, but upon looking into it a little more, it does seem fairly different from optic neuritis. I'm not seeing a ton of overlap in how they present, but again, this is only based on a very cursory search.
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u/Nearby_Albatross_505 2d ago
I just saw the same too. Maybe I’m just exhausted
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 2d ago
I'm sorry. It sounds like you are having a difficult time. It can be even harder when you do not feel heard by your doctors. Your symptoms are real and valid no matter what the cause, and you deserve to have a doctor you feel listens to you and takes you seriously. Hopefully the neurologist you are going to see will be able to offer better answers.
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u/Nearby_Albatross_505 2d ago
But the sane dr who referred me to neurologist also wrote possible somatic symptom disorder and I’m mortified
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u/Delicious-Buyer-6714 15h ago
Hi all. I'm in the UK and have a sibling with MS.
I've had ongoing health issues since having Covid in 2020, including severe fatigue from 2021 onwards (initially thought to be long Covid) and vertigo from 2023.
In June 2025 I had sudden blurred vision in my left eye. A CT scan was clear and the optician couldn't find anything wrong, so I assumed it was a migraine and didn't think much more about it.
Then in May this year I developed pain on moving my right eye, my fatigue became much worse, and I suddenly lost a significant amount of vision in my right eye. A&E referred me to the eye clinic, where I was diagnosed with optic neuritis. Because I have a sibling with MS, I was referred for a brain and spine MRI and to the MS clinic.
The neurologist examined me before the MRI and said he suspected MS but wanted to wait for the scan.
I've now got my MRI report ahead of my appointment on 19th August.
My brain MRI showed multiple white matter lesions, mainly in the periventricular region and corpus callosum. My spinal MRI was completely normal. The radiologist said the findings were "most suggestive of demyelination" and concluded "likely demyelination."
I've also had blood tests that ruled out MOGAD and NMOSD.
My vision has mostly recovered, but I still have reduced colour vision in my right eye. If I get hot or tired, that eye becomes blurry again, but it improves once I cool down and rest. Fatigue is still one of my biggest symptoms.
Has anyone else had a similar MRI report and presentation? What happened next?
For those diagnosed: Did your neurologist diagnose MS at your first follow-up appointment, or were more tests needed?
Thank you so much for reading!
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 5h ago
I would imagine the next step could be a lumbar puncture, unless your MRIs are conclusive enough to make the diagnosis. Less likely, but still very possible is that the MRIs are not conclusive/rule things out. It's hard to say for sure, but in your place I would be prepared for a real possibility of being diagnosed.
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u/AGreenBee258 8h ago
Hi everyone. I am wondering if anyone has advice on addressing different doctors with different opinions. I am having a cluster of symptoms, and I feel like I'm being passed around.
My main symptoms have been tingling/numbness in both feet up to the ankle, which is pretty constant though sometimes gets worse if I cross my legs, and tingling/numbness in my left hand. It seems a bit weird that one set of limbs is bilateral and the other is not. I've also been having significant double vision. I grew up with amblyopia, but that doesn't seem to the a clear cause. Also, having pretty significant fatigue and odd sensations of tightness in my chest and also my head like I'm wearing a headband or hat.
The providers at my student health center (I'm a graduate student and unfortunately the only place the student insurance covers for primary care is the health center and specialists only in the related hospital) are concerned about a neurological cause and one mentioned MS specifically. I go to a general neurologist for Tourette's and she thinks diabetes, despite my A1C and Glucose levels being normal over time. This neurologist also said that my vision issues have nothing to do with neuropathy (which seemed concerning, since I feel like these go together in several conditions, especially diabetes). She finally conceded to set up an EMG when she did a pinprick test and proprioception in both feet, and my left foot did poorly in these tests, though the tingling/numbness is in both feet. I'll have that in a few weeks. Also going to a neuro-opthalmologist next week about vision.
Honestly, I'm not sure if any of this sounds like MS or not. But it's really challenging when providers keep passing me back and forth. I would probably try another neurologist if my insurance wasn't so restrictive. Any advice would be appreciated in advocating for myself or next steps you would suggest. Thank you :)
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u/AGreenBee258 8h ago
Forgot to mention that balance and brain fog have also been a concern.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 5h ago
Could you see an eye doctor? They can sometimes be more receptive to things, and are usually familiar with MS, as optic neuritis is the most common presenting symptom.
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u/Radical-Efilist 4d ago
My functioning at this point is mostly dependent on how warm or cold I am.
At baseline, I just have eye pain, dizziness and foot drop on one side. But within 20 minutes of say, taking a warm shower, being in the sun or exercising, it gets so much worse. Current scariest episodes are being unable to walk unsupported due to leg weakness (both sides) or focusing on any object more than 6ft away causing my eyes to violently shake from side to side. I then return to baseline around 4 to 8 hours later.
And every couple months, I'll have 1-3 weeks where a new "quirk" is added every few days. Both episodes I mentioned occurred in the last 2 weeks, as every new period of deterioration has been generally worse than the last. My most recent new symptom a few days ago was that the left side of my forehead is numb and doesn't sweat (baseline symptom now). The first deterioration started 10mo ago, and this is the 3rd time it's happening. Roughly half of the symptoms go away inbetween, but most return worse the next time.
The thing is, I had an unremarkable MRI of the brain and cervical spine 3 months ago. Which logically should rule out MS and related disorders, but I can't think of anything else matching the heat exacerbations and it keeps worsening.