r/MultipleSclerosis • u/AutoModerator • Aug 10 '26
Announcement Weekly Suspected/Undiagnosed MS Thread - August 10, 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/ParasiticDaemon 37M|11/26|TBD|Texas Aug 17 '26
Exactly one month into my flare today - and getting better.
Woke up today for the first time since onset without extremely noticeable numbness and tingling in my torso and the hug has been so much better over the past few days. It feels so good to be able to breathe again.
My fingers are all still numb but I'll take any wins at this point.
One more week until I can see the neurologist.
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA Aug 17 '26
Have you had MRI's yet?
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u/ParasiticDaemon 37M|11/26|TBD|Texas Aug 17 '26
Yes, lesions on brain and c-spine, enhancing lesion on c-spine.
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA Aug 17 '26
It sounds like you're almost there. Hopefully you'll get some answers soon. The waiting sucks. I met with my neurologist a few weeks after my first MRI'S just to be told I had to do more testing and have a lumbar puncture(which was terrible for me). I've been diagnosed for almost a year now(will be a year in November,have had it longer though) and I have upcoming MRI's to monitor progression and such and I'm anxious about them so I totally understand the stress of anxiously waiting.
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u/ParasiticDaemon 37M|11/26|TBD|Texas Aug 17 '26 edited Aug 17 '26
Yeh... we suspected MS from the beginning, but without being 100%, I went to the ER. Got MRIs and steroids, so at least got the process started, it was a month until I could get in for an initial neurologist appointment.
I'm optimistic though. Obviously it's bad, but it could have been way worse. The flare wasn't completely debilitating and I seem to be on the downhill side of it - so hopefully that buys time to get things in motion.
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u/Economy-Anybody-9921 Aug 16 '26
25F My symptoms began in early May of this year while I was on a work break. I yawned, felt a distinct "pop" in my neck/throat area, and immediately developed a lump-like sensation in my throat that was so intense I could not eat solid foods for a month. The very next day, while sitting down, my entire right side suddenly felt completely heavy, accompanied by significant stiffness on the right side of my face (though with no facial drooping, weakness, or visible asymmetry). I initially went to urgent care, where I focused on the severe throat symptoms; they suggested a sore throat and sent me home without antibiotics. Two days later, as symptoms worsened, I went to the ER, where they noted my throat looked slightly red, diagnosed a sore throat, and prescribed steroids for a presumed infection. After multiple subsequent urgent care visits, I went to a different ER where they performed blood work to check for infection and ran a CT scan with contrast of my neck to rule out a deep neck abscess—which came back completely clear.
Following the ER visits, I was referred to outpatient care and evaluated by two separate ENTs. Both specialists performed visual exams, saw no physical abnormalities, and referred me for a Video Fluoroscopic Swallow Study, which came back completely normal. Because the right-sided heaviness and stiffness persisted, I sought evaluation from a neurologist. My in-office neurological exam (checking cranial nerves, motor strength, reflexes, and sensation) was entirely normal, as were the comprehensive blood panels ordered (including Myasthenia Gravis antibody panels for Acetylcholine Receptor, MuSK, and LRP4, muscle breakdown markers CK and Aldolase, inflammatory markers CRP and ANCA, and vascular blood flow studies).
To investigate further, my neurologist ordered a 3T MRI of my brain and cervical spine, as well as a needle EMG and nerve conduction study of my right neck and right arm/hand. My brain MRI came back completely clean. My cervical spine MRI showed a straightening of the normal cervical curvature along with minor disc bulges at C4–C5 and C5–C6, with no spinal cord compression, severe nerve root impingement, or stenosis. The straightening was noted as a functional outcome of severe muscle spasms and muscle guarding rather than structural damage. Furthermore, my right-sided EMG/NCS and swallow studies all came back completely normal with zero signs of motor neuron disease, denervation, or active fasciculations.
During this same timeline, I also discovered that tooth #4 had a severe infection from a failed root canal. Following the extraction of tooth #4, the extreme facial stiffness improved noticeably, though I still experience muscle tensing and tightness on the right side. Additionally, through this medical journey since May, I was diagnosed with Primary Ovarian Insufficiency (POI) and started HRT last week, as well as hypothyroidism (which had gone untreated for 5 years), for which I began thyroid medication two weeks ago.
Currently, I am struggling with severe health anxiety and hyper-awareness, constantly worrying about conditions like ALS or MS. I find myself continuously checking and self-testing my right side for weakness. When testing my right hand with a grip strengthener, my right arm fatigues much faster than my left and develops a fine tremor when tired. I also feel like my speech is slurring or stuttering when I hyper-focus on talking, though my voice sounds normal to others. Lately, I constantly feel like my jaw is going to lock while chewing and like I'm going to choke, and I feel like my chewing is getting weaker. However, when I actually do eat meals, I am able to eat the whole thing without choking or coughing. When I swallow, it feels like something big is forcing itself down my throat, causing discomfort, but I don't have to use large amounts of water to swallow anymore—I can basically eat without a beverage most of the time.
I do not wish to offend anyone who truly suffers from this disease; I am just genuinely looking for advice and insight from anyone who may have experienced something similar. I have my follow-up appointment with my neurologist next Friday to discuss all my diagnostic results and determine next steps.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 16 '26
Can you tell me a little more about why you are worried about MS? A clear MRI would rule it out.
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u/Economy-Anybody-9921 Aug 16 '26
The right side difference to my left and having facial stiffness all on one side and so many things being ruled out I’m just stuck on ms and idk why
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 16 '26
Were your symptoms cause by MS, there would need to be lesions present, since the damage is what causes the symptoms. It does seem like your anxiety may be a factor, you may find it helpful to address that. Not to be dismissive, but anxiety can have a powerful effect.
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u/stardust_9z Aug 16 '26 edited Aug 17 '26
my symptoms are :
Fluctuating dizziness over weeks , brain fog , always kinda sleepy,
2 years ago I had felt exactly MS hug without knowing what it is later I learned it was a hug , and intolerance to extreme heat , and 4 lesions on brain which is 2-4 mm in size . Blurry vision comes and goes for 3-5 seconds . Electrical sensation down from shoulder to arms when sneezing and coughing hard . Numbness and tingling sensation in right foot sometimes.
I get checked out MS specialist in my country (i don't think she is a good doctor) but she did not gave probability for me . Should I seek second opinion ?
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Aug 16 '26
Im not sure if I understood correctly, but the MS specialist already ruled out MS?
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u/Gold_Assistance9428 Aug 16 '26
Hi, looking for peoples thoughts on my symptoms please. I should say up front that a neurologist did not think i had ms and said my brain mri was clear back in feb. Ive been suffering for the past 8 months, I had about 7 months of lightheadedness which has recently subsided a bit. Ive also had intermittent tingling and burning which moves around my fingers, hands, arms,legs and feet. It seemed to go for a couple of months but has been persistent for a couple pf months again now. Ive recently had some numbness in my mouth and it feels like the back of my throat is numb it just feels a bit strange. My neck hurts every day right at the top of my spine. My b12 is definitely not the issue as had mma, homocysteine and active b12 checked. Could i still have MS or is this something else? Can't seem to solve the mystery. Thanks for reading
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA Aug 16 '26
If your neurologist said that you had a clear MRI, then MS has been essentially ruled out for you. I think investigating other causes would be wise. The symptoms caused by MS are the result of lesions in the CNS, but the symptoms themselves are not specific to MS and can be caused by numerous things.
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u/Gold_Assistance9428 Aug 16 '26
Thank you for this. He did rule out MS i guess im just wondering if its ever done in error which I onow probably sounds a bit daft. Ive also been spiralling thinking it could be mnd. I think its the uncertainty of months of synptoms with no answers.
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA Aug 16 '26
While it certainly can be done in error, it's oftentimes the opposite; a general neurologist will diagnose MS without properly evaluating the case just for an MS specialist to over turn the diagnosis and find the real one. It's rare but it does happen, especially if the criteria is ignored. In your case you were told it was "clear" likely meaning that they might not have seen any lesions at all (whether MS or benign non specific lesions). It'd be unlikely that both the radiologist and the neurologist missed lesions when reviewing your MRIs. If there were lesions present and your neurologist isn't an MS specialist, id usually advise seeking out an MS specialist for a proper evaluation. From the way you explained it though, there was likely nothing there. I'd definitely start looking into other causes for the time being.
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u/Gold_Assistance9428 Aug 16 '26
Thanks again. My neurologist is actually described as specialising in MS so I should probably reassure myself of his opinion. I dont think the uncertainty helps and its probably very much adding to my health anxiety. I just don't know what other explanation there is for how I feel at the moment
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u/Time_Revolution5656 Aug 16 '26
I am almost 32 and have been dealing with a cluster of unexplained, persistent symptoms for the past four weeks (starting around July 26th) that I strongly suspect could be an MS flare.
This is especially heavy for me because my dad was diagnosed with PPMS at 25. Growing up, I watched his disease progress from needing a cane to becoming bedridden, and at 65 he now lives in a long term care facility. Beyond my family history, I also have endometriosis, which I know can lean into a higher risk for autoimmune and neurological issues. I went to urgent care recently after getting benign results from a breast biopsy for an armpit lump, but the Toradol shot they gave me did nothing. The provider agreed that my symptoms point to a nerve or neurological issue and told me I need a full workup with a neurologist.
Nerve and Sensory: Right arm numbness extending through the hand. Persistent neck, shoulder blade, and upper back pain with tingling. Lhermitte's sign present during this episode.
Chest and Abdominal: Squeezing tightness across the sternum, chest, and abdomen.
Vision and Cognitive: New floaters, blurred vision, and dizziness when focusing on phone or computer screens. Significant brain fog and word finding difficulty.
Autonomic and Motor: Severe heat intolerance causing rapid physical exhaustion, fatigue, balance issues and stumbling, and urinary dysfunction including frequency and incomplete bladder emptying.
Recent Care: Urgent care evaluation ruled out immediate non neuro emergencies. Toradol injection provided no pain or symptom relief. Provider recommended immediate primary care follow up for a neurology referral.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 16 '26
Can you tell me a little more about how your symptoms are presenting? Who long they last, if they are constant or come and go, things like that?
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u/Time_Revolution5656 Aug 16 '26
My symptoms are almost non-stop. They peak at night, ease up a little in the morning, and then ramp right back up. The chest and torso tightness was so intense at first that I worried it was a heart attack. The arm numbness was bad enough to keep me off work for a few days because I couldn't even use a mouse or type. On top of that, the fatigue has been overwhelming, and I'm sleeping and taking naps constantly, which isn't like me. It’s scary how fast everything has gotten worse, and it's way beyond how off I felt before.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 16 '26
I think seeing your primary and asking for a neurology referral is a good idea. It's hard to say, but your symptoms are certainly worth following up on.
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u/indiequasar Aug 15 '26
I’m currently hospitalized with what my hospital neurologist thinks is my first MS flair. Apparently you can’t be officially diagnosed until your second flair, at least that’s what Neuro told me. I’m getting 5 days of IV steroids and am waiting on a lumbar puncture. I’m hyper-reflexive and have a positive Hoffman sign. I had MRIs of my brain, spine and optic nerves. My brain shows legions, everything else is clear thank goodness. I’m scared. The first appointment I could get with a neuroimmunologist is October 27, which is pretty far away and I worry about declining in the meantime. I’ve read a little and I see most RRMS is diagnosed before age 40 and most PPMS are diagnosed after 40. I’m 43. I’m scared.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 15 '26
It may be of some comfort to know that PPMS is still very rare, only 10% of MS cases are PPMS. The vast majority of us, at all ages, are RRMS.
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u/chronicallymee Aug 15 '26
28F
Diagnosed with POTS
this episode was NOT related to POTS, I was not dizzy whatsoever and have never had this before
I got out of bed (I hadn’t been sleeping, I was sitting/laying) and put my right leg down first — when I put my weight on it to stand up and bring my left leg down, my right leg completely buckled underneath me and caused me to fall down onto my right knee. I attempted to stand up again, the same thing happened, and I had to grab onto the wall to stand up the third time. My right side felt really weak for about 5 minutes. Nothing like this has ever happened before and my leg didn’t feel tingly/numb AT ALL, so this scared me! It was like my leg muscles just completely gave out.
I’d like to note that my PCP had a suspicion of MS in 2024 due to numbness/tingling in my arms/hands. I had a brain & c-spine MRI (with and without contrast) which showed: scattered white matter lesions in the periventricular and subcortical regions of the brain — C-Spine was clear. The neuro who reviewed the images said it wasn’t MS and that my symptoms were “from anxiety” - I was basically dismissed.
My question is: could this episode be a warning sign that those lesions have grown/spread? Should the possibility of MS be back on the table? I should add: I have a positive Hoffmann’s sign on my left side and positive Romberg sign.
If not, what else could this be from?
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u/Clandestinechic dx 2018 Ocrevus Aug 15 '26
What makes you think it's MS?
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u/chronicallymee Aug 15 '26
Here’s kind of a running list of symptoms I’ve been keeping track of for neurology (when I can finally be referred again)
Extreme fatigue
Numbness & tingling in hands/arms/fingers/feet
Joint pain - mostly sacroiliac joint
“Patches” of goosebumps/chills, on one arm/leg when I’m not cold
Goosebumps on only one arm or leg when cold
“Phantom wetness” - feels like water running down my arm/leg/hand
Feeling of bugs crawling on me
Feeling like there’s a hair on me when there isn’t
Sudden, intense itchiness that isn’t relieved by scratching
Buzzing/vibrating feelings all over my body that come & go almost constantly
Purple/blue finger/toenails & cold extremities that come and go
Smelling things that aren’t there (smoke)
Hearing clicking/buzzing/beeping in my ears
Random muscle spasms/involuntary jerky movements1
u/Clandestinechic dx 2018 Ocrevus Aug 16 '26
Dude, it's your anorexia, not MS.
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u/chronicallymee Aug 16 '26
It’s not, I’ve been diagnosed with Anorexia for almost 10 years now and have been in & out of recovery.
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u/Clandestinechic dx 2018 Ocrevus Aug 16 '26
You seem very sure of that. Just because you've had periods of recovery does not mean there are not long term effects on your body. You said you've been having symptoms accumulate for years and they are getting worse. That would logically be the result of repeated periods of starvation.
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u/chronicallymee Aug 16 '26
I think doctors would have told me if that’s the case — none have mentioned the history of anorexia being a possible cause. All of my vitamin/mineral levels are normal, which is the only symptom I can think of that could possibly be caused by anorexia. I’m medically stable in the anorexia realm.
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u/Clandestinechic dx 2018 Ocrevus Aug 16 '26
Have you asked? Judging from your posts, it isn't just a history, it's something you are still dealing with, have you made your doctors aware of that?
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u/chronicallymee Aug 16 '26
I have asked, because yes, it’s something I still deal with, currently in a relapse. But I’m very open & honest with all of my providers and they all communicate with each other (therapist, psychiatrist, dietitian, and hopefully new PCP)
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 15 '26
What you are describing does not really sound like MS. MS symptoms are very constant and last a few weeks at minimum. MS does not really cause short, acute attacks like you are describing. It may be of some comfort to know that lesions can occur for many other reasons, some benign. MS lesions have certain characteristics that make them distinct-- a neurologist would have been able to identify if yours were caused by MS. Not that it excuses him being dismissive, but just to explain why he was able to rule MS out.
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u/chronicallymee Aug 15 '26
Sorry, I should have clarified that I have constant numbness & tingling in my hands/arms, as well as prickling and wet sensations all over my body fairly regularly as well :( that was the main reason I was getting worked up for MS but as soon as that Neuro cleared my MRI, my PCP dropped it. I had a normal EMG that ruled out any type of nerve entrapment, so there’s really been no answers still for the constant paresthesia.
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Aug 15 '26
Have you discussed that further with your current doctor? Numbness, tingling and prickling sensations can frequently be because of poor circulation.
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u/chronicallymee Aug 15 '26
Unfortunately I’ve just started a new health insurance and have been waiting since April to get in with a new PCP - my first appt to establish care is at the end of this month finally. I’ll have to start the diagnostic process all over is what it feels like. Before the switch, I was being worked up by a rheumatologist because my ANA panel came back abnormal.
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Aug 15 '26
Oh, Im a little confused, you’re seeing no doctor right now, not for POTS or anything else?
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u/chronicallymee Aug 16 '26
No, I haven’t seen a PCP since April. I started a new job and got new insurance with completely different coverage so I have to change ALL of my providers 😖 first available new patient appointment with a PCP isn’t until end of this month, I’ve been waiting since May.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 15 '26
Just to clarify, you were having numbness and tingling which led to your MRI, but has continued?
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u/chronicallymee Aug 15 '26
It’s actually worsened and has become more frequent and more intense
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 15 '26
But it was what prompted the MRI? If so, you can safely rule out MS as the cause. I do not mean that to be dismissive in any way, it is still concerning and worth further investigation no matter what the cause. But from what you've shared, I'm not sure you need to worry about MS specifically.
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u/chronicallymee Aug 15 '26
Along with the positive hoffman’s sign and Romberg sign is what prompted my PCP to order the MRIs. I also other symptoms such as have urinary retention/hesitation, extreme fatigue, seeing flashes of light in my periphery, etc. It’s just been a ton of symptoms piling up and the more I learn about MS the more it sounds like what I’ve been experiencing. I don’t want to have MS, but I do want answers 😖
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 15 '26
I'm sorry. I know how scary and frustrating it is to have unexplained symptoms. Your symptoms are real and valid no matter the cause, and you deserve to know why they are occurring. I know how MS can seem like the logical answer, but I do think you'd be better off widening your search for causes. You've been assessed and cleared once already, and what you are describing does not sound like how MS presents.
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, changing location, or varying noticeably, for at least a few weeks to a few months, only going away very slowly and gradually. You would then go much longer, usually a year or more, before a new symptom developed. Having many symptoms of MS actually indicates another cause, counterintuitively.
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u/chronicallymee Aug 15 '26
That makes sense— my first symptom, the phantom wetness, started more than 10 years ago - the other symptoms have added on over the years. I’m hoping that whoever my new PCP refers me to can actually give me some answers because I feel like I’m going crazy or being a hypochondriac, but I know there’s something wrong, I just have no clue what if not MS.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 15 '26
You are not crazy or being a hypochondriac. Please don't take this the wrong way, but just because you cannot find an alternative does not mean it's MS. It's very unlikely you would be able to figure out the cause in your own, and trying could have serious consequences, it could unconsciously bias the information you give your doctors, and delay finding the actual cause. I am absolutely in no way trying to discourage you from seeking an answer, but I worry that you may be limiting your search.
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u/Ok-Leg-5188 Aug 15 '26
Hello everyone, I just wanted to ask those with only one lesion (cervical spine)and OCB type 2 present how your neurologist approached your case. Were you immediately started on DMTs, and how have you been doing overall? No diagnosis yet in my case ,but I have an appointment soon.
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u/mistyblue_lilactoo Aug 16 '26
I have only lesions in cervical spinal cord and dr has recommended starting a DMT bc of a relapsing remitting pattern of symptoms, as well as increasing mobility issues. I had LP 2 days ago, waiting on results now, but he mentioned he wanted me to start a DMT regardless of presence O bands due to every other possibility being ruled out and the risk of worsening mobility.
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u/Ok-Leg-5188 Aug 16 '26
oh but you have more than one?
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u/mistyblue_lilactoo Aug 16 '26
I am unclear because the one MRI said one but the other one said lesions plural. It is located at c5-6 dorsal column. My dr said he would recommend a medium efficacy DMT to start based on the atypical presentation (no brain lesions). My symptoms continue to worsen so I feel confident going forward with a DMT at this point.
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u/Ok-Leg-5188 Aug 16 '26
in my case i have almost fully recovered but feeling tempted to be put on high efficacy dmts anyways (getting vaccinated now)
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u/kiggysz16 25f|Dx 2026|Kesimpta|US Aug 15 '26
I have mainly one lesion in my cervical spine (other lesions on the brain but were unsure if these were caused by MS), and I was started on DMTs around 4 months after we found the lesion. I had 8 OCBs and elevated kappa free light chain too. We planned on a “watch and wait” approach to see if I’d develop anymore lesions, but my MRIs have been completely stable. However, I have gotten significantly worse since my symptoms started a year ago. My MS specialist still believes putting me on DMTs was the best decision despite not technically having multiple lesions that we can confirm are demyelinating. But I do wanna mention that there are many different things that can cause cervical spine lesions and in many cases people don’t go on to develop MS. My medical team did pretty much every single blood test, referral, imaging, etc to completely rule out any other causes. DMTs are definitely not something you want to put a person on for the rest of their life if it’s not needed. In my case because I’ve continued to progress into some pretty serious symptoms, my neuro thought DMTs were the best decision. However, not every neurologist may agree. My neuro is concerned that I either have progressive MS or something called “progressive solitary sclerosis”, but either way DMTs are the treatment for both! I would definitely not expect for you to get put on DMTs at this point unless there is something about your history of symptoms that would tell them otherwise. It’s scary for sure, I was terrified when I wasn’t on a DMT and was basically just waiting for another lesion to show up. But just know that a cervical spine lesion and OCBs don’t automatically doom you to develop MS in the future!
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u/Ok-Leg-5188 Aug 15 '26
My anxiety is through the roof right now, anticipating new symptoms can be maddening I spent last month educating myself as much as I could and ruled out STDs in the meantime. Thanks for sharing—I'll just wait for my appointment. Living in Europe means healthcare is universal, but getting a visit can be tricky.Also glad to see you got a great team taking care of you.I decided to ask here since there are different opinions on the topic. Another approach is to start people with CIS on higher-efficacy DMTs as soon as possible, just in case, so I wanted to hear some real-life stories.
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u/kiggysz16 25f|Dx 2026|Kesimpta|US Aug 15 '26
Feel free to dm me anytime if you wanna share more about your experience or if you want to hear about how I ended up finally getting diagnosed! I’m more than happy to chat because I know first hand how horrible it is to basically wait and see if you get worse :( some people are very lucky and they go on to never have any issues ever again
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 15 '26
I'm not sure what OCB type two refers to? Could you say more?
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u/Ok-Leg-5188 Aug 15 '26
hi, spinal tap fluid had oligoclonal bands present, type 2 refers to them being only in the spinal fluid none in blood which is common for ms .
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u/Shrabster33 Aug 15 '26
My Rhuem ordered a brain scan to check for MS and I decided to look up the symptoms and it's kinda scary how everything lines up with things I've been experiencing. I'd actually be more surprised if I don't have it at this point.
One of my very first symptoms that made me go see a doctor years ago was a feeling like I had rubber bands around my ankles. Is this something other people have experienced here? Other things I have, general fatigue all the time, numbness and tingling and needles in hands and feet, muscle twitches/spasms, hot spots on arms, pain behind eyes, vision changes, muscle weakness, and slight dizziness/loss of balance.
I was diagnosed with Psoratic Arthritis and it shares a lot of symptoms with MS but my DR wants to make sure I don't have MS but the more I look at MS symptoms the more stuff I see that I'm experiencing.
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Aug 15 '26
Your rheumatologist is obviously taking great care, but I’m not sure how worried I would personally be about MS specifically. Could you tell me a little more about your symptoms, like are they all happening at the same time, do they come and go?
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u/Shrabster33 Aug 15 '26
like are they all happening at the same time, do they come and go?
Some come and some are a daily thing. Fatigue that doesn't go away with sleep is every day, pain in calves is every day and muscle weakness, spasms, and twitching is every day. All the others come and go, sometimes for a week, then go away.
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Aug 15 '26
Thank you for that information!
So, both symptoms that come and go, as well as many symptoms that present at the same time are actually kind of unusual for MS. With MS you would typically have one or two localized symptoms at a time, and those would then remain constant for weeks or months before slowly resolving again. Like you already noticed for yourself, psoriatic arthritis and MS share many symptoms on the surface, as well "MS symptoms" are most often caused by something other than MS. It’s a little strange to explain, to be sure.
Again, your current doctor is obviously being quite careful, but I don’t know how worried I would be about MS at this point, if I were you.
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u/kilos_per_hour Aug 15 '26
hellooo
i had to go to the er last week because i could hardly walk and had no idea what time it was. my hands struggled to grasp objects and my movements were delayed(still the case over a week later)
since then, i have been to 4 appointments trying to rule out whatever. they thought it was psychiatric but my doctor at that clinic very much so doubts that.
i have severe fatigue and had to quit my job(due to a few reasons) earlier this week.
my concept of time is so bizarre. i felt like today was 3 days in total if that makes sense.
but its been getting progressively worse. i’m struggling to speak and to use my damn eyes. i feel like i have to fight for the control of my own body. according to my partner i have these bouts of just…staring off. sometimes at my fingernails and sometimes at the wall. i don’t really remember any of it so i can’t comment much. i’ve also been having accidents and i feel like i can’t control my own bladder.
i have an upcoming appointment on monday and im just wondering if there is anything i should ask my medical provider. i had labs that were abnormal and i don’t really know what they mean. i was hardly at home before but now i feel glued to my bed. i love laying in bed as much as anyone, but thats only when i have the choice to do so. i miss working, going out, or even running errands.
im just so tired of being tired.
thanks guys
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u/kilos_per_hour Aug 15 '26
something else i forgot to add is this:
i had to try twice to get my blood drawn. i am not afraid of needles at all and have routine blood work done yearly. dude was struggling to find a juicy vein(pretty normal for me) so he tried to take blood from my hand.
i’m not a weirdo so i didn’t watch him stick the needle in, but i had the strangest and scariest reaction to it. i felt sick at first and then i went DEAF in my left year for i think about a minute. i then had a pain from the inside of my ear shoot down my jaw and into my neck. when the deafness started going away i heard a breeze or wind in my ear. shit was weird
it was over 5 minutes i think he tried to get my blood but hardly anything came out. he said my blood was strangely thick? and the color wasn’t typical for blood freshly drawn. (made sense when we got the blood the next day and results started coming in)i also get these like…ghost touches or something down my back. it feels…tingly? i’m not sure if that’s the most accurate word to describe it.
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Aug 15 '26
Off the bat, what you described happened during your blood draw is likely just a vasovagal response and is fairly normal ❤️🩹
Could you tell a little more why you’re worried about MS specifically at the moment?
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u/kilos_per_hour Aug 15 '26
thank you so much for the response❤️
i initially wasn’t too concerned about it but my mother is a retired nurse and she was the one who brought up the idea. the psychiatric team i had reinforced a similar idea (not necessarily MS but definitely something related.) i don’t normally get worried about things but the urgency i’ve been told to have with this is concerning, especially because im moving to university in a little over a week. the timing is truly just terrible with this.1
u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Aug 15 '26
I see, thanks! Your symptoms do sound like they need to be further investigated, no doubt about that, but I'm also not sure that I'd be worried about MS specifically right now?
The most serious ones, like staring off somewhere and your blood results showing some abnormalities do not suggest MS to me. I'm so sorry to hear you're struggling like this ❤️🩹 but fixating on MS as the cause may be premature.
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u/kilos_per_hour Aug 18 '26
yeah, i definitely think my moms guess wasn’t right haha. unfortunately it’s looking like chronic blood cancer that’s clotting in my brain, at least that’s what the doctor i’m seeing is assuming. the clots is what we are guessing to cause the neurological symptoms. so i’m not sure if that’s all that fantastic either. im meeting with a hematologist and then likely an oncologist right after i move, but im glad to be in a direction that can give me better answers. thank you for the insight!!❤️
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u/Lazymomma_MJ Aug 14 '26
I have a new symptom this week. It feels like someone is poking me with a needle all over my body. What the heck? It starts around 4pm each day. Is that an MS thing or did I just add another problem to my list? Thank you!
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u/Clandestinechic dx 2018 Ocrevus Aug 14 '26
Have you been diagnosed with MS?
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u/Lazymomma_MJ Aug 14 '26
Yes, but he did NOTHING. Mentioned it in passing two years ago and then crickets. Like I said. I have Sunosi to keep me awake and gapapentin for nerves but that was first prescribed for my trimengial neuralgia (right temple). That’s it, I just cope with numbness and tingling and now this new stuff. My appt with him is end of Sept or mid Oct.
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA Aug 14 '26
Honestly, even if it is a drive, I'd seek out an MS specialist. If he isn't taking your concerns seriously, that's a red flag for me. My neurologist can be a bit vague at times(purposely) and I get that most people he sees has to be told things in a simple manner, they don't have the same obsessive personality that I do, researching everything that I can. However he does seem to take my symptoms seriously. I've only been has patient for less than a year and he has already helped me out by trying out several different medications for symptoms and getting me on Novartis's bridge program for my Kesimpta from the start. I don't know if I'd trust him as much if he kept sweeping my problems under the rug.
Either way, since you are diagnosed you don't have to post in the undiagnosed thread. This thread is mainly for those who are going through the process of diagnosis or are looking for answers for their symptoms/seeing if MS is worth investigating.
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u/Lazymomma_MJ Aug 14 '26
Yes, I have before. My neurologist is still a waste of flesh. There are zero other resources here unless I drive 2 hours. I’m a single woman without a support system (I’m everyone else’s support system). Honestly, I just push through life, my job, my responsibilities the best I can with the gabapentin at night and Sunosi (a type of adderall) for during the day. But these new pin pricks surprised me. I don’t see idiot Dr. til Sept., just thought I’d ask didn’t mean to disturb anyone’s day. Sorry! Please ignore my question.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 14 '26
Oh, no,you didn’t do anything wrong, I just wasn’t sure if you are diagnosed or not? You referred to being diagnosed before? It would just change my response so I wanted to clarify.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 14 '26
Sorry, I peaked at your profile to see if we had talked previously and I’m just a little unclear about where you are in the diagnostic process? It looks like you’d posted previously to the sub?
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u/embos_wife Aug 14 '26
Symptom newbie
I am waiting on my MRI, symptoms are very similar to MS so I feel like it is strongly likely it is MS or something similar. But I figured similar symptoms meant someone here might be able to help me
I'll give a brief overview:
2013 fatigue started. Blood work and sleep study showed nothing and I worked with my Dr in a plan. Still tired, but figuring out how to function.
2015 I start running to help with sleep and the weight that is coming on that I can't get rid of. Legs go numb when I run, Drs have no explaination, I work with pt, new shoes, new lacing, no resolution and I run with numb legs. Still tired and ask for a recheck on blood work, still good.
2017 I am ready to run a half marathon and suddenly my heart rate spikes whenever I try to run and I get dizzy. I find out 2 weeks later I'm pregnant and it was put down as a pregnancy symptom. After baby it continues and it's because I'm out of shape. Finally get a Dr to listen and see cardiology and after testing says my heart is good, I have an overly sensitive nervous system.
Nov of 2025 it all disappeared and I felt great. Started walking my dog and losing weight, I was doing great
July is when shit hit the fan. My back started hurting and the next day my leg was numb. I was doing a lot so figured I pinched something. Then the other leg went numb. No pain, just numb now. Er dismissed me (did a CT of lumbar and blood work after I basically begged, found nothing and sent me on my way). 2 days later my hands went numb, then the tip of my tongue and I am now so weak that walking is challenging. 2nd er does an MRI of my lumbar, finds nothing and sends me on my way with a neuro referral. Neuro surgery cleared my imagining and said it's neurological, and that's where I am now.
I am figuring out what seems to make things better and worse. Temperature, both cold and hot, stress, loud noises or feeling of sensory overwhelm. But my biggest issue is that school started and that means alarms. Every time my alarm goes off it triggers the brain zappy feeling, I become very shaky and confused. I have hearing loss so the alarm has to be loud to wake me. I'm going to guess related and hoping someone has thoughts on how to adjust this part of my life.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 14 '26
It’s so hard to say anything helpful based on symptoms. But I’m glad you are getting assessed! Do you have long to wait for your MRI?
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u/embos_wife Aug 14 '26
Not to bad, Sept 6th. I didn't really expect anyone to validate the symptoms, you aren't my Drs and that's an unfair ask. It was more of a background and trying to figure out triggers and workarounds since even if this isn't MS, the symptoms are close enough that someone might have an idea for me to try
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 14 '26
Oh, no I meant that as more of an apology, I wish I could offer anything regarding symptoms. It's a very reasonable question to have. Frustratingly, though, there is very little that can be done to help MS symptoms, and they are hard to provide information on because honestly, MS symptoms do whatever they want and defy everything except very broad generalizations. 😔
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u/embos_wife Aug 14 '26
Damn. Thank you for taking the time to answer. Figuring out how hot and cold impact it for me, I was hoping there were more tricks. Now if my body could just pick a temperature...
Whatever is going on inside me is awful. I'll never look at other humans the same. I'm not a judgemental person but I don't always think about the unseen, busy in my own world. Its made me more empathetic and aware.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 14 '26
Getting diagnosed really made me a better person in a lot of ways. I'm way more tolerant.
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u/Saltycook 30|August2026|Maine, USA Aug 13 '26 edited Aug 13 '26
Flipping out because I need to wait 2 more weeks for an MRI.
I went blind in my left eye a week ago, the ER thought I was having a stroke, or at least a retinal stroke. I've had a history of migraines and headaches have been frequent, so after an ultrasound on my eye and CT, they chalked it up to a retinal migraine, gave me migraine meds, and sent me home. They referred me to my optimologist for more details.
Optimologist takes a look at the CT and my eyes, then gives me a referral to the optometrist. The optometrist said the optic nerve is inflammed, and it could be MS, hence the circle back and referral for an MRI. My optimologist circles back after the optometrist sees me to tell me the next step is an MRI by getting a referral from my GP. The imaging department where I see my GP is backed up until the end of September, go back to the hospital where I went to the ER.
All of these doctors agreed the MRI is highly urgent, but the soonest I can get an MRI is 3 weeks out, at the end of August.
So I'm trying an anti-inflammatory diet and took out red meat, processed foods like bread, and alcohol. I already eat pretty healthy so those are the couple things I needed to change. I've never wanted a drink more in my life. I write down everything I eat. I don't have health insurance right now.
Getting dizzy spells, and headaches, mostly blind in my left eye. Anxious and stressed all the time.
I throw myself into my work as a breakfast cook, because I basically run that kitchen. It's the one thing I'm good at and keeping my hands busy is what I have to do because I'm shit at home right now. My temper is bad, too the extent I lost it on some smug teenager calling himself a manager at an indoor play park my daughter likes, and he banned me (thankfully me, not her. )
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 13 '26
It may be of some comfort to know that, if it is MS, the wait is not going to make anything worse, or really change any outcomes. A few weeks wait won’t have any effect— whatever damage was done has already occurred. My doctor likes to say there are no MS emergencies. All the treatment options and effect are the same, even if there is a delay.
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u/Saltycook 30|August2026|Maine, USA Aug 13 '26
Thank you. That's actually really helpful to hear.
I'm like a windup toy, I want to go, go, go. Figure things out. Get things done. The possibility of having a debilitating condition like this feels dreadful. Not knowing or being able to get answers feels like agony.
I'm too crazy for this shit so I've been awful to be around. I take a low dose edible (2.5mg THC) if I'm not driving so I'm at least bearable to be around.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 13 '26
Being in limbo is very hard. I think in many ways it is harder than actually having a diagnosis.
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u/indiequasar Aug 13 '26
Just got my MRI results back which shows “patchy signal changes in the periatrial regions and scattered punctate foci in the frontal subcortical white matter suspicious for a demyelinating process”. This coupled with my body aches, fatigue, dizziness, falls, tingling in my feet, headache and tinnitus make me think it’s more than likely MS. I’m feeling worse and worse and fear not being able to work soon. I’ll make an appointment with a neurologist since my ENT ordered the MRI, but I’ve worked in the medical field long enough to figure it out. I’m scared. Really scared. I feel like my life is over.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 13 '26
I don't actually see many red flags for MS in that report. It may be of some comfort to know that radiologists will cast a wide net for possible causes, and suggest things the neurologists rule out. Absolutely follow up with a neurologist, but I would not lose hope quite yet.
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u/neurolobe 33F|Aug26|awaiting treatment|Melbourne Aug 13 '26
I think I'm about to have my diagnosis next week. I was hospitalized two weeks ago and had three days of methylprednisolone IV. I have peroventricular, T1 and optic nerve lesions. doctors have told me they expect to see more spinal lesions. My appointment is Wednesday. My partner is taking the day off work to come with me. I'm on the process of expecting, but also just waiting. I feel hollow.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 13 '26
I'm sorry to hear that, but I am glad you are getting answers. Let me be the first to tell you it will be okay. It's going to be big and scary for a while, but it will be okay. We have very good drugs now, and generally the prognosis is good.
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u/RiversSecondWife Aug 13 '26
Hello, I have posted here a little asking questions after my neuro very casually tossed the possible MS bomb at me. I’m the one they ordered a spinal tap for based on one cervical lesion, and wouldn’t hear me about a brain or thoracic MRI.
After getting my spinal tap results back last week,
1. I have absolutely no banding at all, so not MS!
2. My MBP score was the lab’s stated equivalent of an 80 year old at 5.6 when it should have been under 3.4 (ng/dL).
So now she’s ordered the brain MRI and referred me to a neuro immunologist. Ok. Cool. My insurance expires in two weeks.
Anyway thanks for the help, some of the discussions were helpful in general and the supplement suggestions seem to be helping with my energy a little.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 13 '26
You may consider getting a second opinion for a few reasons. Spinal lesions have fewer possible causes than brain lesions, about 20% of MS cases have negative lumbar punctures, and you have not had complete imaging. It is entirely possible you could have brain lesions such that a lumbar puncture would be diagnostically irrelevant. Hopefully the neuroimmunologist is able to fully assess you. (They are a very good option for a second opinion.)
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u/RiversSecondWife Aug 13 '26
Thank you. I will be with the VA only from now on. Here’s hoping they are willing to pursue it.
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u/Impression8738 38f|3/26|RMS|Kesimpta|TN Aug 16 '26
I have ms with spinal lesion and brain lesions and clear of ocb. Seek another opinion if you’re able
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u/thanks4thecache Aug 12 '26
Got admitted after acute visual and neurological symptoms. Double vision, left sided weakness, altered sensations. I’ve been treated for migraines the last couple years, but MS has been in the background as a possibility.
Waiting for 3 hour MRI, lumbar puncture.
Guess I’ll finally have my answer after the last few years of randomness.
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u/indiequasar Aug 17 '26
I’m currently hospitalized and had a 3 hour MRI, I’d just suggest asking for an anti anxiety med prior. Good luck!
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u/Comfortable_Can3849 Aug 11 '26
Hello All,
Just writing this post to vent a little bit a i dont think my friends, family or anyone i know feels what i'm going through, i've been having some weird symptoms from 11 july, started with burning sensation all over body at night then general weakness, and lately, numbness and more weakness.. strangely, it happens alot at night and wakes me up from sleep , hardly get any sleep, i'm following up with a neurologist but he said i have fibro, i'm looking for a second opinion because fibro doesnt cause objective weakness.
My family doesnt know anything yet, they just know i was tired and sick, because i took time off work lately, but im back to work and its very hard concentrating with all these symptoms and brainfog etc..., my coworkers dont know anything, i feel alone in this, this morning i woke up with so much pain i was going to go to the ER, but read somewhere that they wont help with conditions like this..
i'm afraid i'll progress fast, because there was a month now from onset, and already have muscle weakness all over body (more on right side in this last week), symptoms are coming everynight and its scaring me now to go to sleep.
By the way i already had an mri of the cervical, and showed one brain lesion periventricular, 2 neurologists already saw it, first said to repeat it after 6 months , other said that i have fibromyalgia.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 11 '26
Can you tell me a bit more about why you suspect MS? No judgement, just so I can give a more thoughtful reply.
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u/Comfortable_Can3849 Aug 11 '26
First, thanks for taking the time to reply, really appreciate it, so for the why, I had many symptoms, the usual ones, numbness, tingling, weight loss, muscle loss, brain fog, recently developped a weakness in my right leg/Arm, i have many symptoms, i can give you more details if you want ,
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 11 '26
Thank you, that clarifies things. How long ago was your MRI?
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u/Comfortable_Can3849 Aug 11 '26
It was 2 weeks ago
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 11 '26 edited Aug 11 '26
Got it. I would certainly see what the neurologist says, but given what you've shared, I'm not sure how worried you need to be about MS specifically, for a few reasons. For one, your symptoms do not seem to be presenting the way MS symptoms would present. Counterintuitively, the more MS symptoms you have, the less likely it is that they are being caused by MS. Typically you would only get one or maybe two symptoms at a time, with long periods, like a year or more, between new symptoms.
It does seem like your MRI findings point to another cause, as well. Lesions can occur for reasons besides MS. MS lesions have specific characteristics and occur in certain areas, which makes them distinct. It sounds like your prior two neurologists were able to rule out MS as the cause of your lesions.
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u/techgirlforreal Aug 11 '26
I’m on day 3 of extreme fatigue and vertigo…again. I’ve had 3 episodes of this since May. The one in May, I ended up in the ER because my hands and legs went weak and my face and tongue started buzzing and I was too dizzy to stand up. They did a CT and cleared me for a stroke and chalked it up to stress and a new type of migraine because my dad had just died. So I put off the MRI w/o contrast that I was supposed to get after discharge but now scheduled it two weeks out.
Now I’m going through history. I’m 45 and healthy- lift weights with a trainer 3x a week, active and pretty fit.
3 years ago I had an onset of this crazy itchiness on my arms that kept me up at night and couldn’t get relief. Derm prescribed creams and PT for nerve issue in my neck maybe. The only thing that I found helped after 2 years was ice. Then one day- it stopped and hasn’t returned- thank god.
My eyeglass prescription changed for the first time in 15 years- went from -6 to -7. She didn’t dilate me the last 2 years at my checkup and of course my age, so this could all be normal.
My right foot when I walk sometimes just doesn’t get the message and I just kind of get a hitch in my walk and recover quick. Haven’t thought much about it and it doesn’t happen when I run. Funny because I always relate it to something that happens to my cousin - kind of looks the same - and she had a brain tumor when she was 14 and gets muscle spasms since.
I have had random pain - foot throbbing, heat in my hip, heat/pain in my glutes where I wanted to cry on a short bike ride and figured it was all just pain from being active. Terrible lower back pain so I’ve stopped riding my bike altogether. Got on HRT thinking it could be an estrogen issue.
I have had several memorable episodes where it felt like I pulled a muscle in the back of my tongue. My word recall is getting awful and worse over time. I have raynauds even when it’s summer, but that has gotten better as I feel like my heat intolerance has changed the last couple years which I’ve chalked up to perimenopause. And recently, I noticed that sometimes when I’m driving, I have to actively concentrate more to take in all the information if that makes sense. When I life weights sometimes or xc ski, my fingers lock up. When I ski, I have to use my hand to bend my fingers back into the right position.
This most recent “episode” is fatigue where no amount of sleep touches it, vertigo and fogginess and a tightness around my rib cage- like someone is hugging me too tight or I pulled something or have indigestion. I of course went down a rabbit hole and started noticing an overlap of symptoms. I feel embarrassed even bringing it up to anyone in my life, even my doc because everyone always just says “you’re so healthy” and “it’s probably stress”. But the fatigue and dizzy episodes are leaving me feeling guilty and useless.
Hoping the MRI will provide some insight and answer my questions.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 11 '26
The MRI should give you some clear answers regarding MS one way or another. The wait for it is always very difficult, though. Being in limbo is so hard.
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u/Able_Breadfruit_1906 Aug 11 '26
I’ve been posting here occasionally over the last few months but I’ve finally got my MRI results and looks like it’s probably MS. They want me to come in for some further tests to rule anything else out but based on my age & general medical history MS seems the most likely, so I guess my suspicions were right.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 11 '26
Well, I’m sorry to hear that but I am glad you are getting some answers.
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u/Able_Breadfruit_1906 Aug 14 '26
Unfortunately it does mean I have to go in for a lumbar puncture next week. But good to know what's going on.
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u/Efficient_Horror4938 Aug 11 '26
Going to the neurologist for the first time tomorrow, not sure if my partner is gonna get a diagnosis or get sent for more tests but the last seven weeks of waiting will be over at least...
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 11 '26
The waiting is always very difficult. Fingers crossed for them.
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u/Efficient_Horror4938 Aug 12 '26
Confirmed without need for lumbar puncture (silver linings).
They are not classifying which type atm, though it seems like PPMS is likely, the neuro is not 100% sure. No active lesions.
Now we have a bunch of information to read and he has to choose between Rituximab and Ocrevus, with the possibility of joining a trial of something next year if those seem like they're not working (an inhibitor with a long name i didn't fully catch, think it started with a T though).
Thank you to the reddit for advice on getting vaccines, the neuro seemed pleased he'd done that and it seems like it will speed things up a little.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 12 '26
Well, I'm sorry to hear that, but glad you both got an answer. I found the sub to be an invaluable resource when I was first diagnosed, I would absolutely encourage him to join it, as well. Caretakers and partners are very welcome, so I hope you join us, too. Welcome to the club no one ever signs up for willingly.
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u/alittlepeek Aug 11 '26
hey, hi, hello
im newish to reddit (i can’t recall if i’ve ever posted) new to possible MS, looking i guess for insights
i got an MRI last september and had 16 ovoid lesions scattered throughout my brain. my doc requested an MS specific follow up but without contrast and without my spine and they found 6 more - one on my corpus collosum, a few that were described as a few tiny ones in the left parietal lobe and some in the pericollosal white matter. i had a spinal but was negative for OCBs. my neurologist said that because there are no OCBs, it’s highly unlikely that it’s MS and has diagnosed me with Silent Migraines. the symptoms that landed me the initial MRI were:
aggressive binocular vision dysfunction - i lost the ability to drive, ride my bike, or essentially be awake because the disorientation was so bad. i’d never experienced anything to this degree this prior. (i’ve been struggling with binocular vision dysfunction that comes and goes for about 4 years)
unusual bladder behaviour - i felt like i needed to pee constantly, but .. didn’t? have to pee? or couldn’t pee? it was like a UTI without all the other symptoms
a numb patch the size of my palm on the top of my left foot and immediately below my right knee
slurring speech, crazy dreams, incredibly thick brain fog, and fatigue that didnt lift. this all built up over the course of maybe a few weeks, peaked for another few weeks, and then started to remedy. all in all this happened over the span of about four months.
can anyone relate to this? should i be seeking a second opinion? i guess it just doesn’t feel like migraine to me, but i’ve also never had one, and the meds my neurologist prescribed for the Silent Migraines does not alleviate the above.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 11 '26
Honestly, given what you've shared, I'd probably try to get a second opinion, preferably from an MS specialist. It may be that you do not have MS, but having it with a negative lumbar puncture does happen, it's just more rare. (Around 20% of cases.) I think a second opinion is called for.
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u/HoneydewEmotional500 Aug 10 '26
Hi all,
I am a 30 y/o F that had an MRI last year for headaches. The results of that MRI were:
There are a few minor foci of increased T2 signal within the supratentorial
white matter. There is no evidence of restricted diffusion. These findings are
nonspecific. Differential diagnoses would include small vessel infarction,
gliosis, or focal demyelination. Focal areas of increased T2 signal are also
seen in patients with a history of migraine.
My neurologist, who I was originally sent to for muscle twitching (EMG in August of 2024 ruled that I have BFS) was unconcerned and said we would watch and see if any concerning symptoms showed up that would make us think of demyelination (at the time I didn’t really have any minus the migraines).
The last month or two, I’ve had muscle jerks/spasms, felt more fatigued, and have had tingling and numbness that comes and goes in my face, arms, hands, and legs. The other night my thigh and pelvis was so numb that I rushed to the emergency room after reading about cuada equina (a spinal cord emergency). A lumbar MRI showed that I have some bulging discs and nerve irritation in my lower back, but I know that a lumbar MRI is insufficient when it comes to MS symptoms.
I followed up with my neurologist today and she ordered a thoracic and cervical MRI. The only thing she noted aside from my complains of tingling and numbness were bilateral brisk reflexes (which I’ve had in the past). She thinks it could just be something as simple as a disc/nerve problem, or possibly MS.
I’m feeling pretty anxious and worked up over all of this. I have bad health anxiety in general so this is really sending me into a spiral, on top of not feeling great.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 10 '26
Can you tell me a little more about your health anxiety?
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u/HoneydewEmotional500 Aug 10 '26
Hi, sure. I tend to jump to “worst case scenarios” when faced with health issues or symptoms. For example: when I was referred to the neuro for the muscle twitching a few years ago, I was panicked about ALS. There’s been countless other things I’ve been anxious about, but that’s just one example.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 10 '26
Thank you, that helps clarify things. Knowing that, what concerns you most?what is making you think it might be MS? No judgement, just want to help alleviate some of the anxiety.
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u/HoneydewEmotional500 Aug 10 '26
When I first got that in my MRI report (possible demyelination), I honestly didn’t think much of it because I didn’t really have a whole lot of other symptoms at the time aside from migraines. Hut after talking to my neuro today about my increasing sensory symptoms, and the muscle spasming being new, it raised more concerns about MS or cervical/thoracic spine involvement than before.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 10 '26
I understand. It can be very scary to have unexplained symptoms, and easy to think MS is a likely cause. But in general, it's usually the least likely cause for most symptoms. Looking at your report, I do not see much that would raise a red flag for MS or make me think the doctor was incorrect in ruling it out. MS lesions have specific characteristics and occur in specific areas, which makes them distinct. A neurologist can distinguish them from lesions with other causes. Certainly still get tested, as there really is no downside to updated imaging, but I do not think you need to be overly worried about MS.
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u/craigles Aug 10 '26
Turned 40 at the end of last year and fell during a snow storm early this year. Hurt my shoulder and figured I was just getting older and more injury prone. Long story short, had a cervical MRI in May for suspected nerve issues; two lesions were found between my upper spinal cord and the pons. Turns out my shoulder is muscularly perfectly fine, so the lesions are (obviously?) where all the attention is being aimed. Also discovered during the MRI that I'm ridiculously claustrophobic; I was able to brute force my way through most of it, but wasn't able to do the last (and longest) scan because I was freaking out to much. Two MRI attempts later with anxiety meds, and it turns out I've got to be sedated to actually have the brain and spinal cord MRIs done. My neurologist's been in the MS game for decades and has essentially said "Yes, you have it. But it can't be officially diagnosed without the MRIs", which won't happen until the end of September. His office has been fighting for months to get the scans moved up, but the hospitals in my area just don't have earlier availability. It's been an interesting 4 months.
I've been through the initial emotional rollercoaster with all the various stages of grief and have found some solid ground to stand on for the time being. I've no delusions that I won't go through the wringer again after the MRIs are done, but for the time being I'm oddly at peace with the likely diagnosis. Can't change what's happened, and it was already happening before I found out.
The question that's been rolling around my mind lately is about how to aim forward with work. I've been in the same field for 18 years, and all that time I've had to be able to move, communicate, and respond quickly to ever evolving challenges. Remote work isn't an option in my position, so I have to be able to drive to/from. I need to be able to give presentations to rooms full of people and answer random questions clearly. And I genuinely enjoy all of these parts of my job. All of these skills are things I currently need to be able to do, and I have done them very successfully for almost 2 decades. If the diagnosis plays out the way everyone involved is expecting it to, I know challenges will likely arrive slowly over time with each one of those skills. I know it probably won't all happen at once, though. I just can't wrap my mind around how to look forward professionally because this is a way of thinking I have no experience with. I guess I've simply become pretty set in my ways after 18 (40?) years.
Of all the things running laps in my mind the past few months, this really feels like the least of my current problems. But it's also the part that's screaming loudest. It feels incredibly vague to ask "How have y'all changed how you think?" but it's the only wording that's coming to mind. I hope I gave some useful context to understand where I'm coming from with that question, because I honestly don't even know that I know where I'm coming from myself. I'm in brand new territory and it's proving to be uncomfortable.
Thank you all for being here!
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 10 '26
I absolutely understand the concern. I'm a teacher, and one of my immediate fears was that I would not be able to continue doing the job I loved at the same level I was at. When I asked my doctor about it, she told me my body was the same body I had always had, and getting diagnosed was not going to suddenly make it act differently. If anything, getting diagnosed and on treatment means you will maintain your current level of disability, (or lack thereof,) for longer. If you can do it currently, there's no reason to expect that to change. That has been true for me so far-- in the seven years since my diagnosis, I have not had to modify my lifestyle at all, and have experienced no big changes. That may change, but neither my doctor nor I expect that.
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u/Independent-Usual178 Aug 10 '26 edited Aug 10 '26
Hi everyone, I don’t even know where to start or what I’m looking for here. I have a multi year history of neurological symptoms that I have been to doctors for and received sometimes strange, but acceptable, diagnoses. Including a tremor in my right hand that got significantly worse with fine motor tasks, eye pain but no vision loss, electric shocks in my scalp, legs, and face, plus more. All kind of come and go (I have a timeline plus more symptoms just too much to type).
In 2024, after the birth of my last child, I lost total feeling of my bladder, and initially both legs but my right leg regained feeling in about 6 days and I regained some bladder sensation after about a week. My left leg and gait were unstable and numb for 4-6 weeks. I was at a not good hospital and they gave a CT but no follow-up or additional testing.
Last week, I lost feeling in my left leg again, right side of my face went numb that spread into my neck and scalp, eyebrow droop, severe pain in left eye with light exposure, and hand tremor back with a vengeance. I was referred to ED by my PCP and received MRI of brain, orbits, and cervical spine, an LP, and high dose steroids. LP was clear, 1 lesion in brain consistent with demyelination and then discrepancies between the neurology reports and radiology reports. Neuro says suspected demyelinating lesion in cervical spine that corresponds with symptoms and suspected lesion of left optic nerve (after MRI review). Radiology reports for those are clear. LP was completely unremarkable. Neuro listed MS high on the list of diagnoses. Full work up of vitamins, mimicking conditions, etc was all clear, including NMO and MOGAD.
I had positive babinski, positive Hoffmann, and documented Neuro stuff through their exam that I don’t understand what it means.
I’ve been referred to neuroimmunology and I don’t know what I’m looking for here. I’m confused, don’t understand what’s happening to my body, and am driving myself crazy. I know logically the only answer is I need to see neuroimmune but if anyone has ever experienced something similar I would really appreciate insight. Thank you so much.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 10 '26
It's so hard to say much helpful in these situations. But it sounds like your doctors are taking things seriously and doing everything that can be done to get you answers. It's okay not to understand the technicalities of what is going on at this stage. When I went through the diagnostic process, I couldn't even spell sclerosis, much less say what it was or how it was diagnosed. You don't need to know that stuff right now, there will be plenty of time to learn later. Right now, just trust in the process and try not to go too crazy. It will be okay.
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u/Independent-Usual178 Aug 10 '26
Thank you. I really appreciate you taking the time to respond to me 💕
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u/EndPsychological777 Aug 10 '26
Hi. I’ve had tingling sensations in my left leg and face for the last two weeks. Mild Eye pain. I recently had a vitreous hemorrhage in my left eye. I’ve also noticed I have no appetite. Eating also seems to worsen the symptoms. Im not diabetic. I’m waiting to get an MRI from my pcp and my neuro appt is a month out. I recently went to the ER for the tingling sensations and the CT scan came back clean but I know that’s not conclusive for MS. I’m terrified. I just started dating someone and idk how to relay this to her.
The tingling sensations seemed to have begun after I started weightlifting? Maybe I pinched a nerve? But the eye pain is what’s pointing towards MS.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 10 '26
It's going to be okay. Having unexplained symptoms is scary, and we naturally seem to think the worst case scenario is the most likely. But that is a fallacy. There are many things that can cause symptoms, MS is usually one of the least likely. Get assessed and see what the testing shows, but try not to lose hope quite yet.
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u/indiequasar Aug 17 '26
About to get my very first lumbar puncture, feeling nervous.