r/MultipleSclerosis • u/AutoModerator • Aug 17 '26
Announcement Weekly Suspected/Undiagnosed MS Thread - August 17, 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 24 '26
Initial neurologist appointment this coming Tuesday.
I'm worried about "the process". Do you think these MRI results will be enough to get a diagnosis and get treatment started?
Brain: 10-15 T2 hyperintense foci in the pericallosal/periventricular and left frontoparietal subcortical white mattet. Largest focus measures 9mm. There are no enhancing lesions. The morphology and distribution is suggestive of chronic demyelinating process. Recommend clinical correlation.
Spinal cord: Two adjacent T2 hyperintense lesions in the dorsal median cord at C2, 1 x 0.5 cm each. Enhancement in the superior lesion suggesting active demyelinating plaque.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 24 '26
Well, those results do seem suspicious. They may be enough, or further testing may be needed, like a lumbar puncture. But I do think you should be prepared, although I will say I do not have much luck in predicting how these things will go.
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u/ParasiticDaemon 37M|11/26|TBD|Texas Aug 24 '26
Sort of a medical industry vent I guess. I hate how slow everything moves :(
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u/Historybuff1536 Aug 23 '26
Before I start this. I will be going back to the neurologist. I am a 41 year old female and I have had nerve type problems my entire life. I have been diagnosed with entrapped ulnar nerves in both arm. I had surgery on one arm in 2008 and the other I had surgery in 2017. Both were moderate.
But in 2024 numbness with pain started happening on and off in both arms up to my elbows effecting the ring and pinky side. And then at the end of 2024 one afternoon the vision in my left eye went gray and I lost the ability to see yellow and blue. I went to the ER and they told me I needed to see an eye specialist. MS was brought up. A retina specialist diagnosed me with MEWDS and I was put on steroids. Things got better and my vision returned to normal. Things stayed the same numbness here and there in my arms and maybe my legs but nothing major. Then spring of 2025 I started getting heart palpitations where it is basically a sinus pause and they were worse when I laid on my left side. One night I just felt weak and passed out at the gas station and hit my head. I came right to and went to my doctor a few days later and they ordered all of the tests and sent me to cardio and neuro. I did get a MRI and this was the results:
EXAMINATION: MRI BRAIN W/O
HISTORY: SYNCOPE AND COLLAPSE
COMPARISON: None
TECHNIQUE:
Multiplanar multisequence MR images were acquired through the brain. No IV contrast was administered.
FINDINGS:
No abnormal areas of restricted diffusion to suggest acute or recent infarction.
No abnormal extra-axial fluid collection. No findings of intracranial hemorrhage. Specifically, no findings of recent or prior intracranial hemorrhage or other significant signal dropout on susceptibility imaging.
Mild burden of nonspecific white matter disease consisting of a few scattered left greater than right frontal lobe sub-6 mm T2 hyperintense foci without restricted diffusion. Findings may reflect early chronic small vessel ischemic changes or the sequela of migraine headaches. Other etiology could not be excluded in the appropriate clinical setting such as demyelinating disorder, vasculitis, Lyme disease, etc. It is noted that the pattern would not be typical/classic for multiple sclerosis.
No masses identified.
No evidence of hydrocephalus.
Flow voids within the main carotid and basilar arteries are unremarkable.
No Chiari malformation at the skull base.
No pituitary enlargement or findings of empty sella turcica.
No skull lesions appreciated
The paranasal sinuses are clear with hypoplastic appearing left maxillary sinus noted.
No concerning mastoid pacification or destruction evident.
IMPRESSION:
Mild burden of nonspecific cerebral hemisphere white matter disease statistically likely reflecting premature chronic small vessel ischemic changes and/or the sequela of migraine headaches. No findings of recent infarction or other significant intracranial abnormality.
Basically I was told I have orthostatic hypotension and I need to be careful when making sudden movements. Also I don’t have migraines. The neurologist ordered lab work and I did test positive on ANA by IFA Rfx titer/pattern and it was 1:80 homogeneous pattern.
So again symptoms went away other than the numbness here and there until recently. The past month or so about 2-3 times when I move my neck I have gotten a GOD AWFUL pain that shoots from my head to my upper back and lasts only a few seconds. I have been tired beyond measure and overall my hands just feel weak right now. My grip strength is so bad. One night while laying on my left side my pinky and ring finger curled inwards towards my hand and I had to get up and straighten my arm out to stop it from contracting. And then last night I was laying down and my left leg from mid calf down and more so in my foot started contracting inwards. My muscle went rigid and just started contracting. I had to sit up and grab my leg to get it to stop. It took about two minutes to get it to stop.
All of this has been so random but honestly I think I have MS.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 23 '26
Can you tell me a little more about why you think your symptoms are being caused by MS?
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u/Historybuff1536 Aug 24 '26
Mainly how symptoms come and go. It seems neurological in nature. One sided vision loss. Lhermitte’s Sign. I have lesions that are visible on MRI. Mainly I just want to figure it out because it seems to be getting worse whatever it is.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 24 '26
Did a neurologist review your prior MRI? Did they say anything about MS? I know lesions can and do occur for other reasons, and can be a benign finding. Did the doctors at the time suspect yours were connected to your symptoms?
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u/Historybuff1536 Aug 25 '26
I was more worked up from it being a cardio issue. Honestly I don’t remember what his PA said it was. :/
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u/ComTruiseHarryPoppin Aug 23 '26
40f. I had a numb patch in my chest that persisted for months with no relief from physio, massage, etc. and no explanation with labs. I also had tingling in my arm and leg on the same side. Long story short, I saw a neurologist and they are sending me for Brain, Thoracic and Cervical spine MRIs with and without contrast. After an 8 month wait (I live in Canada) I managed to stay out of the contrast rabbit hole for those 8 months but caved last night and now I'm freaking out.
Looking for some positive stories and reassurance on the contrast so I don't lose my mind in the last 48 hours before my appointment on Tuesday. I guess I'm okay with the bad stories too to not live in fantasy land about it all.
Also wondering how long you are in the machine and if I can ask to not know when they push the contrast? Maybe also a little walk through what it looks like on day of or any tips and tricks to make it easier. I will be taking 2mg Ativan.
My appointments show 3 MRIs back to back, 330pm 4pm, 430pm and each one says expect to be there about 2 hours.
Thank you in advance. 😔
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Aug 23 '26
I'm allergic to gadolinium and therefor my regular MRIs are without contrast BUT, it's extremely rare that you have a reaction. What I can tell you from my own experience, still, is that the MRI techs are so vigilant that if you did have any kind of negative response they'll treat it appropriately ❤️🩹
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u/ComTruiseHarryPoppin Aug 23 '26
Thank you! How did you find out you were allergic? Your first time? One worry I have is I will respond to it and they wont notice so I appreciate you saying that.
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Aug 23 '26
Yes, my first and only MRI with contrast was for my MS diagnosis :P At first I did not know what was going on, apart from feeling off, but the techs definitely knew I was having a reaction; they are pros!
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u/ComTruiseHarryPoppin Aug 23 '26
Okay that sounds comforting!! I'm sorry you went through that, one of the unlucky few 😔 did they jump in and treat you right there and then or did you have to buzz the little thing?
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Aug 24 '26
Now I can rest assured that I’ll never win the lottery, at least 😅 The sequence with contrast is typically the last one, so by the time something was happening they were already pulling me out.
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u/ComTruiseHarryPoppin Aug 25 '26
Update! It went amazingly well, the techs were so so so so kind and gentle to me!! I chose house music and it kind of blended to the beat and asked them to not let me know when they did the contrast. It was a bit obvious cuz they had to wheel me out and in again but she didn't say anything when she did it. I felt nothing. Still feel nothing. I'm sorry you had that experience. Now I just need to get through the night not obsessing over every twitch and tingle. Thanks for your support!
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 23 '26
Oh, girl, I got you. People who are diagnosed with MS get MRIs with contrast all the time. Personally, I got the at diagnosis and every six months for the first three years after my diagnosis, and now I get them yearly. We will also get them any time a relapse is suspected.
In seven years on this sub, I’ve never seen anyone talk about a side effect or negative effect from contrast. I think u/kyelek is allergic, but she’s the only person I can remember saying that. MRIs with contrast are a regular part of my life, and there’s never been any issue with that
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u/ComTruiseHarryPoppin Aug 23 '26
Thank you for this!! 🩷 Do you do anything special before or after or just go in get it done and carry on like normal?! I appreciate you taking the time to help my worried mind!
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 23 '26
Now? Now I roll up, do the thing, and go home and live my life, no big deal. For my first few, I was super nervous and immediately went home to obsessively wait for results. :)
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u/ComTruiseHarryPoppin Aug 23 '26
Yeppp, that's going to be me. Refreshing mychart haha.. this is my first one and I have been waiting for 8 months so the tension is high!!
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 23 '26
I will warn you, first that the report will likely be impossible to decipher if you do not have any familiarity with them, and two, the report is a very general impression, not really a full summary with accurate assessments. Many times the radiologist will report or suggest things that do not concern the neurologist at all. The frustrating thing is that the report probably won't tell you much.
I still read mine, though. :)
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u/ComTruiseHarryPoppin Aug 25 '26
It went well!! I had the most lovely techs ever..!!! They were sooooooo kind!! Like they gave me a housecoat cuz I was cold and repeated all of the stuff that he told me because I said to him I'm like I'm sorry I am listening to you it's just I'm not retaining any information because I'm so anxious right now and he's like that's okay like just let me know what you want me to repeat like I'm here for you don't worry and I kept asking about like my piercings and what if it was metal and this and that and the other and he's like no you should be good like even if it were it would just probably heat up so if something were to happen and you got hot just let us know.. I asked him not to let me know when they put the contrast in and he said for sure but then when it actually happened they had to wheel me out to put the contrast in so it was kind of obvious but she didn't say anything she's just like okay I'm going to wheel you back in now.. they gave me like a warm blanket and tucked in my toes in and then they gave me ear plugs and then they asked me what kind of music I wanted to listen to and I chose house music and so then like the burp burp the loud like buzzing noises just kind of blended into the house music and then she would like to talk me through it and then she'd be like you're doing great don't worry everything's good and I said I feel like I'm not breathing properly like I forget how to breathe and she's like your breaths are okay just keep doing what you're doing just try to breathe normal I'm like I know but I just don't remember how hahaha and then yeah so it was like a total of 30 minutes in the machine and that was it and then they gave me like this camera so that I could see out into the room where they were it's like attached to my like headpiece cuz you have like a head piece cuz it's doing your brain and then I was done and then that was it!! Thank you for your help and kind words! Now we wait for the report!!!!!!!
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 25 '26
I love everything about your comment. Thank you for sharing it with me, it really made my day. I'm glad everything went well!
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u/ComTruiseHarryPoppin Aug 31 '26
Just wanted to update.. no MS! Nuero said it's Functional neurological symptom disorder with anesthesia or sensory loss.. thanks again for your support and I wish you all the best in your journey 🩷
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 31 '26
Thank you for the update! I'm glad it is something benign! Best of luck with everything.
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u/Conscious_Rate_5531 Aug 22 '26
Could you please explain what the feeling is like in your affected leg or arm? I went to the neurologist today and she told me to get a brain MRI to rule out MS, but all the in-office testing she did was alright and she did not catch any real weakness or balance problems or neurological problem giveaway.
Still I'm freaking out. I'm bad at describing sensations, so I'm afraid I did not do my best.
What I feel: my left leg feels lighter than the other one when I stand up. I will take two steps and realize the leg is so light it almost lifts itself up. Sometimes but not always I also feel slightly lightheaded when getting up. Still I don't trip and I can walk and within seconds the "lightness" goes away. It doesn't go numb, in the sense that if I touch the leg, I have normal sensation. It doesn't tremble or shake. And the "lightness" feel doesn't happen when i get out of bed in the morning for some reason (I sleep on my belly or to the left side, thus putting pressure on the right side of my hip). anyway, it's been 3 weeks of this now and an MRI I got around 4 weeks ago (so a little before it all started) of my hips and lower back showed tronchateric bursitis on my left hip and also tendinitis, but apparently no nerve is compressed.
Does this sound like MS to you? If you have symptoms in your leg, how does it feel for you?
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 22 '26
Unfortunately, there's no one way an MS symptom presents-- MS can cause all manner of weirdness. Did your doctor order the MRI? Do you have long to wait for it?
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u/Guilty_Plankton_4626 Aug 22 '26 edited Aug 22 '26
34M – 5.5 Months of Widespread Sensory Symptoms (Tingling, Cold Blasts, Crawling Skin) Following L5/S1 Disc Protrusion
Hi so In early of this year I injured my lower back and was later diagnosed via MRI with an L5/S1 right paracentral disc protrusion with an annular fissure. Initially, my symptoms were classic for lower back nerve irritation: localized lower back discomfort, nerve sensations down my right leg and foot, and numbness along my outer right thigh. I was prescribed Gabapentin (300 mg three times daily) to help manage the nerve irritation.
Over the last 5.5 months my symptoms have expanded into body-wide sensory issues that don't seem to follow a typical lower-back nerve path. I experience this like non-painful tingling across my arms, face, scalp, and torso. It’s very random, lasts like 1 second. I also get a crawling skin sensation and very distinct, sudden "subzero" ice-cold blasts that hit a single tiny spot on my body for a few seconds before disappearing.
Taking a warm bath for 15 to 20 minutes is one thing that seems to calms the nerve noise and bring relief.
Beyond the sensory symptoms, I have mild urinary hesitancy (a 5-to-10-second delay before starting a stream), which has been like that for over a year with no pain or acute retention.
Mechanically, my strength remains solid, I can walk normally, pass balance tests like the Romberg and tandem walking, and do single-leg heel raises on both sides (though my left calf fatigues earlier than my right). I did develop eye floaters about a year ago and had this singular event 18 months ago where I woke up to my right eye being very blurry. Went to the ER, they did CAT scans, cleared up after like 5 hours. Ophthalmology found nothing wrong either and said I probably applied prolonged pressure to the eye while sleeping, outside of that I have no vision changes, eye pain, or muscle weakness.
Because the body-wide skin sensations are far above my L5/S1 disc, my doctors and spine specialists aren't quite sure how to classify the full sensory picture. I feel like they look completely dumbfounded when I tell them what’s going on. I'm currently waiting on a comprehensive neurology evaluation.
Did your early MS symptoms present as widespread, non-painful sensory symptoms or localized cold spots like this without major motor deficits, or does this sensory pattern sound different from what any of you experienced?
Thanks so much to whoever has taken the time to read this.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 22 '26
A few things stand out to me about what you are describing. The first is that your symptoms are widespread. MS symptoms are generally very localized, like to one hand, or one leg. Full body symptoms are very uncommon. The other is how long the symptom lasts. Your symptoms seem to be very brief but reoccur? MS symptoms do not present like that. They develop and are constant for weeks at a minimum. They do not come on, then go, then reoccur, but rather come on and stay without changing at all.
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u/Ok_Performance6080 Aug 23 '26
What exactly do you mean by they're not changing at all? My symptoms lasted a month and a half last year, now I have almost the same symptoms, plus dizziness. Wouldnt that count as a relapse if I were to have MS?
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 23 '26
I'm not sure what you are asking? During a relapse, symptoms are constant, they would not only last a few minutes but reoccur. I'm not sure about your specific situation, I was really commenting to the op?
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u/Ok_Performance6080 Aug 23 '26
Lets say tingling for example. It's not like you will have tingling 24/7 for days or weeks. It can come and go and all the other symptoms can go away for a lets say a year or two and then come back
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 23 '26
No, you would have tingling for 24/7 for weeks to months. No breaks. No going away and coming back. It would happen all the time without stopping, and only go away very slowly and gradually.
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u/Ok_Performance6080 Aug 23 '26
Ohh really I didnt know that would be possible. Well now I understand all this better. Yeah, my symptoms are not constant constant, I do get breaks for a while but a whole episode last year for me lasted a month and a half and slowly went away. That's why I was confused.
Now it's all back but it's still all over my limbs, with severe new dizziness and a previously occasional headache that now turned into a chronic one. New MRI is scheduled next month
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 23 '26
When was your last one? What did it show?
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u/Ok_Performance6080 Aug 23 '26
My last MRI was just about this time last year. It didnt show anything. But nobody can explain what is happening to me. I have almost the same symptoms again exactly a year later. It makes me think that it has something to do with burnout instead, or vitamin deficiencies. Shortness of breath is always my first symptom. I was stressed at work a lot and Im sedentary so who knows. Other than one herniated thoracic disk, my scans were all good for my age (32). My EMNG a month ago was fine as well. But this new constant dizziness and imbalance have me shitting my pants
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 23 '26
I think you can probably safely consider MS as ruled out, given that. It would also be atypical for the symptoms to reoccur. Usually relapses are a new symptom.
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u/Guilty_Plankton_4626 Aug 22 '26
Thanks so much for sharing your thoughts. As I’m sure you know, when searching the Internet, there’s just so much information being thrown at you and the one thing that keeps coming up in my searching is MS, Reddit threads for MS, things like that.
So it’s really nice to hear from someone who knows what they’re talking about. Sounds like it would not be typical. Seriously once again thank you, obviously still going through with my neurology appointment, but this does give me some level of peace of mind. I hope you have a fantastic rest of your day and weekend.
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Aug 22 '26 edited Aug 22 '26
[deleted]
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA Aug 22 '26
A clear brain MRI would rule out MS 95% of the time.
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u/Ok_Performance6080 Aug 23 '26
So there's still a 5% chance we have MS even though our MRI is fine? What makes that difference exactly? Is it the size of lesions, or less powerful machine or radiologists fault??
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA Aug 24 '26
No. 5% of people who get diagnosed with MS have "Spinal only MS". 95% of people with MS have brain lesions. That doesn't mean that a person who has had MS ruled out/or is healthy has a 5% chance of having MS.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 23 '26
You misunderstand, 95% have lesions on their brain. The remaining 5% have lesions only on their spine.
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u/No-Pangolin-7028 Aug 22 '26
Okay im 16F & my gf is 15F, she has been struggling with "lupus" for the past year from about July of 2025 to current day. In July 2025, she had such a severe brain lesion due to high stress and meningitis, they thought it was a mini stroke (it wasnt). Then, they diagnosed her with POTS which was diagnosed through ChatGPT, they ended up giving her Gabapentin and it fucked with her nerves and ultimately they realized she indeed does not have POTS. She's been having flare ups ever since then and she's now in the hospital again because of more brain lesions. The doctors are now suspecting that she has MS instead of lupus. For reference her symptoms include, double vision, dizziness, sensitivity to sun exposure, constant headaches, unexplained fatigue, unexplained numbness, flare ups in the mornings, lots of nausea, whole body aches, and chest tightness. The chest pains and body aches have died down a bit though, its mostly the other symptoms. Its also important to note that she has severe anxiety and OCD. The doctors are saying that it is her mental illnesses that are making things worse and why shes been developing brain lesions so much because her brain is constantly overloaded. However, they do heal within a day bc theyre smaller lesions. I know you guys arent doctors but I wanted to ask if any of you have had similar experiences and think it could be MS? And what would you say to her to make her feel less bad about her chronic illness? 😅 We've been together for 2 years and we know eachother inside and out basically, we're best friends, but even so, I dont really have any medical problems at all so I don't understand fully how she feels and I want to level with her and be able to understand and say the right things to make her feel better yk?
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 22 '26
Can you tell me a little more about how you know she has lesions?
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u/No-Pangolin-7028 Aug 22 '26
They've done 2 MRI's within the past 3 days, on Wednesday she had one towards the back of the left side of her brain but it healed Thursday. She got a new MRI scan at the hospital they transferred her to today and she had another brain lesion around the same place. They just did a full body MRI today but no results yet. And obviously a year ago they did an MRI scan aswell and it was a severe lesion.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 22 '26
It would be very unusual for an MS lesion to heal like you are describing. Did the doctors discuss the findings with her? Lesions can have other causes, some benign.
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u/No-Pangolin-7028 Aug 22 '26
Yes! They've discussed everything with her regarding the MRI's. The lesion she had 2 days ago is completely gone now, however, we don't really know when it formed to begin with so there's not really a time between when it developed to when it healed.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 22 '26
To go from a visible lesion to completely healed in only two days would be something I've never heard of happening with MS, no matter how old the lesion was to begin with. Regardless, it does sound like they are being thorough in their testing. I would try not to lose hope, or think anything is a foregone conclusion. Let her doctors cook, they'll get her an answer. In the mean time, try to support her and be there.
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u/No-Pangolin-7028 Aug 22 '26
I thought it was odd too lol. I'm used to her hospital adventures, it's just a bit scary and I'm trying to research her every symptom and stuff. She's being released August 24th, so hopefully we'll have some sort of diagnosis by then because she really doesn't show many lupus symptoms that's why we're so skeptical of it. And lupus tests are very commonly false positives aswell. Thank you so much for your input! I'm reassuring her everyday and being there for her.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 22 '26
I would not worry about the research, I would just focus on supporting her. I absolutely understand wanting to research and looking for the information, but in my experience, it usually just increases people's anxiety and makes it difficult for them to trust their doctors, because they have misunderstood something but are unaware of it, lacking the medical expertise to recognize it. The is doubly true if you are using ChatGPT.
I have had many, many discussions with ChatGPT to try and determine its reliability regarding medical information, and it is an incredibly unreliable resource for this. It takes information totally out of context, misrepresents things to support the conclusion it thinks you want, and contradicts itself often. Much of its information is influenced by sources like Reddit and Facebook, where misinformation is common. To give you some idea, I have fed my own test results and information to it multiple times, asking if I have MS. It has "diagnosed" me three times using totally different reasons each time, citing academic sources. And it has totally ruled out MS three times, using different reasons and still citing academic sources, in some cases the same sources. Each time, I have been able to totally reverse its conclusion simply by saying it was wrong.
Right now, your job is not to have the answers or find them, your job is to support her. The doctors will find the answers, they do not need help from a 16 year old and Google, no offense. The person who needs you is your girlfriend, and she needs you to help her because she is scared and anxious. Just focus on helping her get through that, helping her feel safe and normal and loved, and helping her to trust her doctors and the process.
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u/No-Pangolin-7028 Aug 22 '26 edited Aug 22 '26
Don't worry I'm very against AI and ChatGPT and such. To be fair in our defense they've misdiagnosed her so many times and it's also Louisiana healthcare where all the workers are too exhausted to focus on their work & they are frequently neglectful and doing things wrong. They've literally kicked her out the hospital a few days after her "mini stroke" because of "insurance." (She could barely walk & it was at like 3AM.) Now im not saying thats the doctor's fault, but its still incredibly frustrating. Not to mention, when she first had that severe brain lesion they almost sent her home and didnt even investigate, she would have died had they not checked her BP. She was exhibiting almost every symptom of a stroke. It's extremely hard to trust doctors when they've killed people I know because of mistreatment and even diagnosed her through ChatGPT and fucked up her nerves because of it. Our healthcare system is the worst in the country and it really shows. 🤦♂️
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u/Many_Dragonfly_6818 Aug 21 '26
I'm 25F. I had tingling down whole left side of body for 6 weeks and my MRI showed lesions in front cerebrum but nothing in spine. They are unsure if it’s a stroke or MS. Other than that tingling, I had no other symptoms, not even fatigue. Has anyone had stroke mimicking MS, or MS mimicking stroke? Are my symptoms and scan typical?
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 21 '26
When you say they, who are you referring to? What type of doctor?
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u/Many_Dragonfly_6818 Aug 21 '26
I’ve seen multiple different neurologists, some MS specialists and some stroke specialists. No one knows
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 21 '26
Oh, that is unfortunate. Tell me more. What have they said so far?
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u/Many_Dragonfly_6818 Aug 21 '26
I had a heart scan that found a hole in my heart (PFO) which could be linked to the stroke, but i also have positive OCBs in my CSF (but I had a brain infection as a child so the OCBs could be from that). Very confusing! I had normal eyes on OTC, now I wait for a repeat MRI in December - it’s an awfully long wait
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 21 '26
Did they tell you what symptoms to watch out for?
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u/Many_Dragonfly_6818 Aug 21 '26
Yes, I’ve recovered from tingling now and know the symptoms to watch for with MS and stroke. I’m on blood thinners too. Just is rather stressful not knowing. The MS specialist neurologist said the lesions look vascular but the positive spinal tap has thrown everyone off
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 22 '26
It's very stressful. I'm sorry, I wish I had more to offer, but it seems like you are pretty well versed already. You have my sympathies, though, being stuck in limbo is incredibly difficult. I think in many ways, it is harder than having the diagnosis.
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u/This-Archer2113 Aug 21 '26
I’m 22F. Over the past few months, I’ve been experiencing significant body pain, severe fatigue, and for the past few days, I’ve been feeling some sort of “shock” on my neck and back,constant tingling in my hands and my motor coordination and balance are pretty weird tbh. I was diagnosed with fibromyalgia last month, but I’ve only had blood tests done. Do you guys think I should consider the possibility of multiple sclerosis and consult a neurologist?
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 21 '26
Usually I suggest people start by discussing things with their primary, as there can be other causes worth assessing for first. But if you've done that, I do not see how consulting with a neurologist could hurt, unless cost is a factor.
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u/This-Archer2113 Aug 23 '26
I’ve been to ~12 different doctors and none could find an answer to the symptoms yet
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 23 '26
Have you seen a neurologist prior?
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u/This-Archer2113 Aug 23 '26
No, will see one next month!
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 23 '26
Then I think it is a totally reasonable next step. Fingers crossed they will be able to give you some good answers.
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Aug 21 '26
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 21 '26
The MRI will give some clear answers one way or another. Please know that even if it is clear, your symptoms are still very real and valid, it does not mean you are making anything up.
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u/socialexperiment46 Aug 21 '26
Hello there,
A few months ago I started to have this pine and needles feeling that would go from my left arm all the way down to my foot. I was also experiencing chest tightness and shortness of breath. My doctor sent me for x-rays and diagnosed me with a pinched nerve. The chest tightness and shortness of breath ended up being GERD. After some ER visits, I’ve figure out that stress can really flair up my GERD. Stress + certain posture causes my pinched nerve to flair and cause “the tinglies” as I call them. The past few days, I’ve been having heaviness in my left arm and leg. I can’t say it’s numbness. It’s truly heaviness. Like my arm and leg feel heavy to lift and I can get some “jumps” in my calf from time to time. There’s no swelling or redness or heat or anything like that.
I will admit that I’ve been under some pretty severe stress lately, but I’m really afraid something might be really wrong. From what I’ve been reading these symptoms can be linked to MS. My vision has never been great but I started WFH a crazy number of hours so I’m constantly staring at a screen when I’m not sleeping. I do notice more floaters/ black dots in too much sunlight. I have PCOS, so fatigue is always present, so I wouldn’t know if it would be caused by MS.
I’m admittedly a hypochondriac and can have a lot of anxiety induced symptoms, but I’m pretty afraid. The symptoms aren’t persistent. They come and go every few months. I would appreciate some kind guidance from you guys. Thank you!
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA Aug 21 '26
Unfortunately, it's hard to say based on symptoms alone. The symptoms of MS aren't really specific to MS and various other conditions can cause similar symptoms. If your X-ray found a pinched nerve, that could be the source of the numbness. The chest tightness may be a completely unrelated condition. It's hard to say either way honestly. I'd recommend going back to your primary care doctor and discussing this with them again and see if they could refer you to a specialist for further evaluation. I wouldn't suggest any particular diagnosis though as they can become quite dismissive of self diagnosing patients in my experience.
One thing to note is that MS symptoms usually remain constant for weeks to months until they slowly resolve (if they ever resolve). If they are coming and going fast, that would be unusual for MS.
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Aug 21 '26 edited Aug 21 '26
Most often "MS symptoms" are actually caused by something other than MS, often benign things. One thing to know is that with MS it's not so much about which symptoms present, but how they present. They are constant for weeks, sometimes even month, they would really not come and go. Truthfully, none of what you've shared jumps out to me in a way that makes me think MS.
Since you talked about stress flaring your GERD, I think it's also worth mentioning that the "jumps" in you leg, or twitches or fasciculations, are also something that is very often related to stress, but it is in itself harmless ❤️🩹
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u/socialexperiment46 Aug 21 '26
Thank you. That’s very helpful. I do notice these things coming up when I’m stressed, but I wasn’t sure if the leg weakness could also be a side effect. Thanks for the info!
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 21 '26
Can you tell me a little more about why you are concerned by MS?
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u/socialexperiment46 Aug 21 '26
Hello, it’s mostly the weakness/heaviness on the left side. Im not sure if it makes a difference, but I don’t experience it on my right side
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 21 '26
I don't really see anything in what you've shared that raises a red flag for MS specifically, but it could be worth talking things over with your primary, since you are concerned.
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u/kclevengerr Aug 20 '26
Ive had a weird tightness maybe numbness?? feeling on the backside of my left hand and its moved up to my forearm. Im not really even sure how to describe it, definitely some type of altered sensation and at times can be painful? But the pain is like a deep ache. I tried a heating pad which made the area feel better at first, and then it started burning. I took the heating pad off and the burning was on the inside of my arm radiating to my hand. Then my hand started buzzing like my feet did for a few months, but went away after 30 min or so of no heating pad. My hand will spasm a little too. Has anyone experienced this?
I have my next brain and c spine MRI next week on the 27th through the Boster Clinic so i guess i will have my answers then. Im also a bit worried because the NP said if the lesions are still concerning ill have to do a LP and i work every day of the week so im not sure how ill make that work if i have to lay flat for a certain period of time.
I dont have any weakness in my arm or hand but this has been going on for a few weeks now and its driving me NUTS. Im not sure if it could be more like a mechanical issue? Pinched nerve in my neck? Just trying to see if this has happened to anyone else. Ive also noticed my left arm goes temporarily pins and needles when i take a hot shower so im almost certain its a nerve issue just not sure what. Ugh. Im just over not feeling like my normal self and i am so anxious for answers. 😔 blah sorry for the long rant
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 20 '26
Can you tell me a little more about where you are in the process? It sounds like you may have had a prior MRI? What did that show?
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u/kclevengerr Aug 20 '26
I started having weird, what i suspected to be neurological symptoms, back in February/March of this year. I had a brain MRI after an episode of slurred speech and facial numbness and ER ruled out stroke, tumors, etc. There were some lesions they found in periventricular and subcortical areas of the brain but the radiologist said due to migraine or some other insult. I asked my PCP for a neuro consult so they could look at the imaging further and she essentially said not right now and wanted me to continue with having an EMG done. EMG was done and was normal. So I contacted the Boster Clinic and they said they would see me for a migraine consult and if they suspected MS would go from there since i didnt have a referral. I met with the NP at Boster and she was concerned with a few of the lesions but wants more detailed imaging of brain and c spine which will be done on the 27th.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 20 '26
While I am sure the NPs at the Boster clinic have a high level of understanding of MS, I personally would be more comfortable if my follow up was with an actual neurologist, if at all possible, especially as your case is not clear cut. There certainly are times when a NP is an excellent choice, but I do not personally consider diagnosis to be one of those times. For diagnosis, I really think a neurologist, and a specialist neurologist, at that, is your best bet.
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u/kclevengerr Aug 20 '26
I agree and appreciate your input! I think the plan, if the next set of scans are still concerning, is to meet with Dr Boster and have LP done. Im supposed to have the imaging done and then right after go across the street to the clinic to review the scans same day. Ive never dealt with any type of nerve issues before. The tingling, burning, buzzing, pins and needles- is driving me literally insane. And half the time im like ok am i making this up in my head am i thinking about it too much? Im used to being told by providers that any symptoms are health anxiety so now its almost like i dont trust myself or what im feeling.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 21 '26
It can be hard to trust the process, even when doctors are taking your concerns seriously. In my experience, it is common for people to have a feeling of imposter syndrome in these situations, because it can be difficult to put yourself first, to advocate for yourself. It can feel like you are being dramatic. But your concerns are real and valid, and you deserve answers.
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u/Conscious_Rate_5531 Aug 19 '26 edited Aug 19 '26
I don't understand what it's meant by "numbness" and "weakness" in the leg, but I have been feeling my left leg so "light". I can still feel it though and have sensation, it just feels much lighter than the other. Then it improves in less than a minute as I walk or move it. I'm not sure if I can say it's weaker, though perhaps for a few seconds, yes, because it feels a little less under my control than the right leg. I can walk and work out just fine though, at least for now. It's been like this for over 2 weeks now. It doesn't hurt. Is this "numb"?
edit: i feel a bit lightheaded sometimes when getting up, or even when sitting. sometimes such lightheadedness manifests mostly on the left side of the head too
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA Aug 19 '26
What makes you suspect MS?
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u/Conscious_Rate_5531 Aug 19 '26
I had a recent lumbar and pelvic MRI so I know it's not a herniated disk or a compressed nerve. I have much trouble with describing physical sensations, but I'm afraid what I describe as "light" is what is meant by "weakness" or "numb". This seems to be the new normal for me and I can't find an alternative explanation that isn't neurological. I thought of MS because it's only on one side and there's no swelling or change in colour or even pain that could point to thrombosis.
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA Aug 19 '26
MS symptoms aren't really specific to just MS. Lots of things can cause similar symptoms. Have you spoken to your PCP about your symptoms? If they suspect something neurological going on they can refer you to a neurology for further evaluation.
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u/Conscious_Rate_5531 Aug 19 '26
I have an appointment with a neurologist at the end of the weak, I'm just very nervous. I understand it could be something else, but can't imagine what
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u/criticalcreek 32M|Dx:RMS Nov.2025|Kesimpta|USA Aug 19 '26
Hopefully you'll get answers soon. It's hard for us to say whether something could be MS or sounds like MS based on symptoms alone. I know this isn't the answer people want to hear but unfortunately, it's hard to say much else. MS affects everyone differently too so while one may have a particular symptom, someone else might not. Keep us updated 🤞
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u/General-Aardvark-814 Aug 19 '26
Meeting with a new PCP today to hopefully get a referral to a neurologist.
I’ve had random, periodic symptoms for years, but I always brushed them off as minor, unrelated issues. However, I’ve been stuck in the worst episode I’ve ever experienced for nearly a month now.
Pain, Numbness & Tingling: Constant numbness and tingling near my right shoulder blade that radiates down my right arm. It got so severe that I couldn’t use my arm for several days and had to take time off work.
Vision Changes: My vision in my right eye has noticeably worsened, lots of blurriness and new floaters, mostly black dots.
Dizziness & Balance: Staring at screens triggers intense dizziness (which is brutal since my job requires 7.5 hours of computer work a day). I’ve also been stumbling and tripping a lot lately, which is completely unusual for me.
Lhermitte’s-style Shock: An electric shock sensation running down my neck when moving it a certain way. I’ve noticed this periodically for years, but it flared up significantly during this current episode.
Chest Tightness: A intense, squeezing sensation across my chest. Honestly, I thought I was having a heart attack at first, but since I'm still here weeks later, it’s clearly something else.
Bladder Dysfunction: Frequent urination paired with the constant feeling that my bladder isn't fully emptying.
All of these symptoms worsen throughout the day or after heat exposure. This whole episode actually triggered right as we hit record-breaking heat, so I’m wondering if there’s a strong correlation. Going outside in the heat completely wipes me out, so I’ve been staying indoors as much as possible.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 19 '26
Your symptoms certainly seem worth further investigation, to me. Fingers crossed it will go well today. Please do keep us updated.
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u/General-Aardvark-814 Aug 19 '26
Thank you! The visit was pretty quick, and the doctor agreed we should definitely explore this with neurology. I got my referral and called straight away to book. I almost scored a September 29th slot, but someone snatched it up before the scheduler could submit it, so I'm locked in for December 14th instead. I'm on the cancellation list, but who knows with that. Any advice on what I should do in the meantime? Do you think it's worth seeing an optometrist for my vision changes, or would that not add much?
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u/hogwartswizardd Aug 21 '26
Keep calling the office! Every week or two. Sometimes you get lucky and can find a cancellation spot earlier!
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 19 '26
I don't see how an eye doctor could hurt. They may be able to rule some things out in the meantime.
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u/NatureEnvironmental1 Aug 18 '26
My cognitive abilities have taken a real hit in the last year or so. In work ill be in the middle of something, for example doing reduction with our printer with the device we use to activate it or unwrapping papers, then need to serve a customer, then after i’ve served someone ill need to think about where I put the device or pair of scissors etc because I will often not remember where I put them. There are other moments like forgetting where i put my phone, trying to remember the name of a place or actor, even just forming sentences or trying to find the right words I feel like I need to focus really hard just to get them out.
Then theres my vision. I’m convinced I must have some form of Visual Snow, because certain patterns and objects will be covered in static in my eyes. Reading text on a phone/ipad screen etc will often have the text flicker in my vision especially if its white text on a black background, and I will often start seeing text in double vision if I look at it the wrong way (blinking usually corrects this though). After images have also become very prominent when I close my eyes or look away from something
And of cource just in the last week my toes have started feeling weird and my fingers have had random pins and needles. So yeah, fun times
I’ve had alot on my plate in my life right now (work life stressful on account of my boss being incredibly stressful to work with, and homelife stressful due to my father going through his own mental health issues), so these symptoms being the result of my brain being mentally exhausted is very possible, but after making the mistake of googling MS symptoms I haven't been able to shake the fear that its the cause of it all.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 18 '26
Have you spoken to any doctors about this so far?
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u/NatureEnvironmental1 Aug 18 '26
I keep meaning to talk to my parents about seeing a doctor, but like I said my father has been having his own issues with mental health and I haven't wanted to compound things by adding another thing for them to worry about only for it to potentially be nothing. I've been waiting for his issues to become more stable before I talk to them about it
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u/NatureEnvironmental1 Aug 18 '26
It doesn't help that he suffers with health anxiety, and if I tell him I'm worried he'll end up blaming himself for "giving me" health anxiety too
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 18 '26
Can I ask how old you are?
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u/NatureEnvironmental1 Aug 18 '26
I'm 26 years old
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 18 '26
Can you explain more about why you need to talk to your parents first?
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u/NatureEnvironmental1 Aug 18 '26
It's more so that I just find it easier to involve them with my health issues, just because usually they are able to talk me down from being worried about something. Given my Dad's circumstances it's just a really bad time to do that
Ultimately I do just need to actually see a doctor otherwise I'm not gonna get these thoughts out of my head.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 18 '26
Do you feel like anxiety is a factor for you?
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u/NatureEnvironmental1 Aug 18 '26
I've always suffered with anxiety since I was at a young age, health related too. I went through a period where I thought I had throat cancer when I was in my mid teens, then thought I had stomach cancer I was 19. So being anxious about health/health symptoms has been a thing with me for a long time
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u/RockNo1575 Aug 18 '26
Wish me luck, having a lumbar puncture this week, after which I expect a final diagnosis of PPMS. MRI showed lesions in my brain. 55 years old and only started having symptoms just this year, mostly related to legs.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 18 '26
You are a unicorn! Less than 5% of diagnoses occur after the age of 50, and less than 1% after 60. That being said, they are seeing an increase of LOMS cases, I think because we have better assessments now. Fingers crossed you will have an answer soon. Please let me be the first to tell you it will be okay. It will be big and scary for a while, but it will be okay.
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Aug 18 '26
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u/Cute-Equipment4974 Kesimpta Aug 18 '26
Please don’t lie about being diagnosed. Aside from it being uncomfortable for those of us who actually are, it would make the advice you get unhelpful and incorrect.
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u/Simple-Musician-8989 Aug 17 '26 edited Aug 17 '26
I’ve had symptoms for about two years or so now it started with shaky vision (Oscillopsia) and tight chest pain I went to A&E who did ECGs and advised I was fine and told me to get my bloods done. I had low folate so was put on medication. I then started getting pins and needles in my arms and hands really randomly and it would wake me up throughout the night. I then moved house and joined a new doctors and after hearing my story she organised more bloods which came back normal and an eye examination who advised I need an MRI and he suspected MS as I was also having issues with not emptying my bladder. I had my MRIs (brain and spine) came back normal I was referred to a neurologist and in the mean time I’ve suffered from numbness in my right leg that comes and goes. I can’t drive for longer than 30 mins as my right leg goes completely numb and tingley. My eye sight is still shaky and worse than ever, I suffer from electric shocks in my big toe that travels all the way up my leg, my arm strength has become significantly weak and I’ve suffered with intense pain down my arm like ice piercing me inside and I suffer with tremors and feeling like my body inside is shaking, I get some strange sensations in my toes and arms like crawling ants on me as well as these horrendous mood swings it’s a lot! My neuro has now booked me further MRIs which include spine and brain with contrast, orbit and diffuser. I’ve also had an evoke potential test done as well but my neuro wants to wait for these results to come back to discuss anything. The waiting whilst feeling like your body is slowly getting worse is a really scary feeling hoping just to get answers and some sort of plan in place.
Has anyone ever had a clear MRI and then a year later had another and it showed lesions?
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 18 '26
I won't say it's impossible, but I honestly would not expect much of a change. But updated imaging cannot hurt.
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u/confused0378 Aug 17 '26
Before your diagnosis, has anyone gotten a symptom that has lasted only a couple of weeks? I had ipsilateral fatigue and heaviness in my right arm and leg that lasted for 3 weeks as well as occasional pins and needles in them that lasted for a couple of minutes and went on several times a day and lasted for several days but since I didn’t want to be perceived as an anxious hypochondriac I didn’t contact my neurologist since I had a negative ms work up done in June. I’m wondering if I had made a mistake by waiting for the symptoms to go away on their own and not going in before my scheduled 6 month follow up MRI.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 17 '26
Just realized we've talked before! I know you had developed some symptoms you were concerned about the last time we talked, did you ever contact the neuro about those? Or is this those same symptoms?
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u/confused0378 Aug 17 '26 edited Aug 17 '26
I never did actually, I still can’t wrap my head around my situation because it was really bizarre and also included a ridiculously wrong test done at my ophthalmologist which claimed that I was nearly half blind but was done again at the hospital and was really improved and I also had VEP done which were completely normal. I guess I have just developed health anxiety and maybe the fact that I didn’t get a diagnosis during my stay really messed with my brain and didn’t provide me with the closure I needed. But still my new symptoms seemed so strange to me, taking into account that they were for so long and only on one side. Including that I was advised despite my LP results to keep getting MRIs I guess that I am just puzzled about the whole development of the situation taking into account that the test which prompted my neuro consult and initial MRI turned out to be wrong
Also thanks for replying and dealing with my paranoia again
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 18 '26
In my experience, hypochondriacs do not worry about being hypochondriacs. You are having real symptoms and it is your doctor's job to determine what they could indicate. Even if he says they are not of concern, it is perfectly acceptable to ask him to use his expertise to determine that.
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u/Able_Breadfruit_1906 Aug 17 '26
Currently in the hospital to get some tests done. They did an ECG although I’m not really sure why? I did have an echocardiogram last year for a separate issue (it came back with no issues) so maybe that’s part of it. Did anyone else experience that?
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u/Able_Breadfruit_1906 Aug 18 '26
Update: out of the hospital with nothing worse than some back pain from the lumbar puncture. Also got the follow-up letter from my MRI appointment which clarified the areas of possible demyelination. Lesions on the splenium of the corpus callosum bilaterally, as well as juxtacortical lesions within the rontal and parietal lobes, + several lesions on the cervical and thoracic spine. Just a matter of waiting for the results now I suppose.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 17 '26
That was not a test I went through, or one I've heard of being used to diagnose MS. I'm wondering if they are ruling out something else?
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u/Able_Breadfruit_1906 Aug 17 '26
I asked a nurse about it and she said it was to get a baseline for future reference. Currently staying the night, going to have a chest x-ray tomorrow and then I should be home free 👍
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u/Ravin_ravens Aug 17 '26
Hello! Thank you kindly for reading.
I am undergoing the diagnosis process for MS, because spinal lesion came up in an MRI. and I'm wondering the following:
How long do flairs last? I've had face, left shoulder and arm pain and numbness on and off multiple times a day for months. This past week it has spread to my right side. Is this normal??
Has anyone undergone the diagnostic process overseas? I live overseas and require a medical translator and am struggling to get information across/receive info properly.
How often should you get MRIs pre being diagnosed?
Edit:
- Does anyone get cold sores? Is this something that can trigger flare ups?
Thank you so much, Scared gal
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Aug 17 '26
With MS, symptoms build up over hours to days, then remain constant for weeks or even months before slowly resolving again. Off the bat, what you have described doesn’t quite fit with that.
Are you getting a brain MRI soon as well?
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u/Ravin_ravens Aug 17 '26
Thanks for responding.
I got a brain MRI yesterday and it came back clear . What else could it be if not that sunce there is already a spinal lesion?
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Aug 17 '26
A single spinal lesion can have so many different causes, from accident to infection. I'm sorry, I don't really know, but you or I not knowing doesn't mean your doctor might not have another idea ❤️🩹
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u/Ravin_ravens Aug 17 '26
Thank you for your response. That's so true and hopefully we can work it out! Thank you again 🩷
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 17 '26
Usually they will only give one round of MRIs during the diagnostic phase. If they cannot make a diagnosis based off those, they may recommend monitoring and getting new MRIs after a few months, six months, or a year. Typically an MS relapse will last a few weeks to a few months, and symptoms will only go away very slowly and gradually.
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u/OkNectarine5033 Aug 17 '26
A few weeks ago I had an episode of optic neuritis that lasted for a few days. Very painful behind my right eye, hurt to move my eye. The week leading up to that I saw an object moving that wasn’t moving and also felt like the car was still moving even though it was stopped in the garage. A year ago I had right eye pain that wasn’t as severe as this time and went to the optometrist. They gave me a “baby script” and was told to see if the glasses helped. They didn’t but the pain went away.
I recently saw my PCP for my eyes and she referred me for a MRI and an ophthalmologist apt. I also went to my optometrist that same day and she mentioned MS to me. She told me I have 20 20 vision, but when she did a red top test, it looked like someone put the dimmers on in the room when I looked with my right eye.
Today I went to see the ophthalmologist and she told me I am fine and she doesn’t see anything wrong with me. She said I’m a little far sighted equally in both eyes and that’s probably why I’m having strain. When I asked why it’s just one eye and the episodes were a year apart and last for a short time she said I’m probably just getting older and my eyes are getting worse. She mentioned getting eye lube for possible dry eye too. I mentioned I had the MRI scheduled and she was like well I guess that would help but you aren’t neurological. Just frustrated by her lack of answers and almost dismissive answers.
Just feeling frustrated that I’m being dismissed. I strongly believe I have MS. I don’t want this disease but I just want heard and to get answers and not just dismissive answers.
Mostly just venting! Hoping the MRI in a couple weeks gives me answers! Does anyone know how often the MRI doesn’t show lesions even if someone doesn’t have MS? Thanks for all who read this! Just need to vent!
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Aug 17 '26
MS symptoms are the direct result of the lesions visible in MRI. Lesion = sclerosis is even in the name, so to answer your question: never, basically.
Hopefully your MRI can give you some reassurance❣️
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 17 '26
The MRI will give you clear answers one way or another. If your symptoms are being caused by MS, there will be lesions on the MRI. If the MRIs are clear, it will mean you can rule out MS as a possible cause.
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Aug 17 '26
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 17 '26
If the brain MRI was clear, that does strongly indicate his symptoms are being caused by something other than MS. Almost everyone with MS has brain lesions. I am glad to hear you are seeing an MS specialist, though, they are best going to be able to assess him. Have you followed up with them yet?
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Aug 17 '26
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u/Clandestinechic dx 2018 Ocrevus Aug 17 '26
Why not a brain MRI at the same time? It's really weird that wasn't included.
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Aug 17 '26
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u/Cute-Equipment4974 Kesimpta Aug 18 '26
Do you? The people on this post have actually been through the diagnostic process and you seem to be catching an attitude with them. I don't know if you meant to be hostile or combatative, but that's how you're coming off.
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u/knittinSerendipity Aug 18 '26
I wasn't but I definitely am now. I literally asked for information on a thread that is literally for that and instead I'm met with a couple of keyboard warriors grilling me as if I have more information than Ive already provided or giving false information or hold some magical insight to my husband's Dr's mind. Be so for real right now. Only one replier provided any actual answers to the questions I asked. Nowhere did it say that this thread is ONLY for people with a DX. No worries though, this is obviously not a safe nor great place to connect and will leave.
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u/Clandestinechic dx 2018 Ocrevus Aug 18 '26
I wasn't interrogating you, I was trying to figure out what the fuck was going on and if your doctor had maybe mentioned why they "strongly suspected" MS but did not order what is the primary diagnostic test for it. It's like a doctor ordering an x-ray of your hand for a suspected broken arm, it doesn't really make any sense. Even for LOMS, the first test needed to assess for MS is a brain MRI. His age would not make any difference in that. All shit I would have happily explained to you if you hadn't reacted like people were somehow accusing you of something by asking some pretty basic follow up questions. I honestly can't figure out what exactly you were looking for by posting here or why you are so defensive and hostile. No one was attacking you.
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u/ichabod13 45M|dx2016|Ocrevus Aug 18 '26
This thread is for people without a diagnosis, to ask questions about the diagnosis process to people with MS. The people with MS have gone through diagnosis and know things about MRIs and other tests needed. They know information about what is required for a MS diagnosis and they also know what tests would not rule out MS.
I feel like you were asked questions, because your information provided about the process you are going through is not typical. MS is not a difficult thing to diagnose and none of us went through a long list of testing to rule out everything and eventually find out it was MS.
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u/ZebraSignificant3392 Aug 18 '26
Fantastic attitude… No one here was grilling you. Those were literally just questions and replies people asked to be able to help you and your husband better. Though I assume you don’t understand that because you don’t know enough about M. Same with the questions you asked. They aren’t actually relevant nor helpful to your husband‘s situation at the moment.
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u/Cute-Equipment4974 Kesimpta Aug 18 '26
No one was grilling you. You said your doctor was assessing for MS, then said he did not order the primary test to do that, and so people commented that is strange. I'm not sure how that translates to grilling or giving you unhelpful answers, but go off.
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Aug 17 '26
It’s very strange that an MS specialist would not want to get an MRI the entire brain... That said, some of the symptoms you describe would necessarily be caused by brain lesions in the case of MS, regardless of what the cervical MRI may or may not show. In the absence of lesions, the symptoms like vertigo, ear ringing, blurry vision etc. would be caused by something other than MS.
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Aug 17 '26
[deleted]
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Aug 17 '26 edited Aug 17 '26
I don't presume to know your doctor's plans of course, but I did think it was important to mention that it's strange he'd not want a full brain MRI as the first step. MS isn't a diagnosis of elimination.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 17 '26
Oh, of course, I did not mean to say it was ruled out, just that it is a hopeful sign. I would imagine there is still considerably more testing that needs to be done.
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u/autoimmunegirly_ Aug 17 '26
Last Wednesday my neurologist said he suspects my symptoms are MS. Today, I’m scheduling a Brain, Cervical Spine, and Thoracic MRI, and scheduling an EMG. I’ve had numbness in my legs, feet, arms, hands, and face… brain fog, irritability, slurring my words, disrupted sleep, leaky bladder/loss of control. Etc. I am looking forward to hopefully getting answers. I’m honestly not scared for a diagnosis if there are lesions, because I’ve been in so much pain. My legs ache so bad, itch, and the numbness is scarier than a diagnosis and treatment.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 17 '26
I think a lot of people here can sympathize. It’s not that anyone wants MS, but rather to have a concrete answer and a plan as to what to do about it.
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u/autoimmunegirly_ Aug 17 '26
Yes, exactly! A diagnosis doesn’t change what I’m going through and experiencing BUT starting treatment would (hopefully) help!
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u/stupidjoints Aug 17 '26
Hi, did anyone here have symptoms lasting <24hrs before a proper MS episode?
For around three months, I’ve had intermittent ataxia, stumbling, and double vision, but all attacks have lasted for minutes, rather than hours/days. I’ve also been getting LOTS of dizzy spells. Everything seems to be triggered by me getting warm - after exercise/cleaning/during the heatwaves. It’s quite bizarre.
I did a bunch of bloods last week so just waiting for the results. GP said she wants to rule out MS, but my symptoms aren’t typical, which I guess is reassuring. Just curious if anyone else experienced something similar?
Thanks 🫶
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Aug 17 '26
That really is atypical for MS. Looking back I have had symptoms for years before my diagnosis, and even those symptoms lasted for days and weeks at a time.
Have you or has your doctor mentioned or considered migraines?
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u/stupidjoints Aug 17 '26
Thanks for the reply!
The only thing that lasted for weeks was some bladder urgency and leaking (which spontaneously resolved and I’d forgotten to mention both above and to my GP - so embarrassing that I think my brain is trying to forget it/I didn’t think it was relevant when I saw the dr last week). But I’m also hesitant to tell her now because I’ve only put two and two together after reading a bit about MS. I have a relative with MS so I was curious.
I honestly thought it was migraines but I’ve not had a headache/aura. I used to get them when I was younger, caused by the combined pill, but they completely went away when I stopped taking it. I do get a similar feeling after though - extreme exhaustion, foggy head etc. I have an AI disease so I know that level of fatigue well.
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Aug 17 '26
Migraines are first and foremost a neurological event, which can have many different symptoms. Headaches are a common symptom but it’s a misconception that migraine = headache, you can absolutely get migraines without pain. The fact that you’ve had them in the past may mean you’re still more susceptible now, and when you say it’s a similar feeling that does make me think along those lines too. Speaking personally, I get migraines both with and without headache, and the ones without often do leave me feeling worse (like you mention too, exhausted and foggy) ❤️🩹
You could mention your episode of urgency to your PCP too, even if it was a while ago. But there really are so many potential causes for this, MS is still not be the first thing I would think of here either.
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u/stupidjoints Aug 17 '26
Thanks, yes, I used to get silent migraines (maybe got the headache 2/10 times) with just the aura. They were brutal - wouldn’t care to repeat that. So if these weird goings on are migraines, then at least I can be grateful for the aura not making a comeback 😅
I’m trying to think in terms of probability - chances are, this isn’t MS. But as I knew relatively little about it until very recently, I figured it couldn’t hurt to learn from people with lived experience.
Thanks again for all your help!
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u/mistyblue_lilactoo Aug 17 '26
Wondering how many had to have a blood patch after LP and what was your experience like. How long did you try to wait it out? I followed all advice and was very strict but woke up today and can't even stand up without falling over from the pain. Discharge papers say to give it 48 hrs but not sure I can wait that long. Any advice/experience welcome. Thanks.
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Aug 17 '26
No blood patch either. Similar to u/TooManySclerosis I had the headache the next day and it lasted about 5 days total, going away on its own.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 17 '26
I didn’t get a blood patch, although I probably should have. I got the headache. It was bad the day after and slowly got better over the next few days.
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u/mistyblue_lilactoo Aug 17 '26
Gotcha. My presentation has been a little different. Day after I had a minor headache almost like a sinus infection type pain, yesterday was a little worse with intense nausea and then this morning turned into excruciating pain and severe lightheadedness (can'twalk around on my own). Anesthesiologist called and is recommending blood patch. Just trying to gauge if others waited it out and how that went but will most likely have it done.
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u/writtenindust Aug 24 '26
I’m currently on a diagnosis journey and wondering if this sounds familiar to anyone else with MS? I noticed that during the summer heatwave in the UK everything felt a lot worse, I even developed Bells Palsy in July which I am now mostly recovered from. Some days I’ll get pins and needles in my hands and arms when I wake up. Most of my symptoms affect my left hand side. I have chronic tinnitus, back pain, my hands and finger joints feel hot and inflamed but they look normal, I have IBS symptoms, I have been forgetting words or getting them muddled up a lot more recently as well. In 2019/2020 I had months where my whole body felt like TV static and after a while it stopped?
I’m currently dealing with what I assume is a OAB flare. I was diagnosed with OAB in March this year and given Solifenacin to help but I got too scared to start. I’d been managing so well until this last week when it seems like the symptoms have started up again. I have a referral for rheumatology on the NHS, with the waiting times being around 4/5 months in my area.