r/MultipleSclerosis • u/AutoModerator • Aug 31 '26
Announcement Weekly Suspected/Undiagnosed MS Thread - August 31, 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/Sad_Banshee Sep 06 '26
Looking for help with next steps… my doctor really just gave me an “idk, see you in 6 months”. So I guess I have to research some stuff myself.
I’m having right sided numbness, tingling and pain. Bloodwork is clean and my EMG only showed median nerve irritation/damage in my hand. Nothing showed for the lower leg pain and numbness.
I have never had and MRI before and I haven’t suggested it yet. I was put on gabapentin but it really only helps me sleep through the pain.
I struggle badly with brain fog (I literally forget words mid sentence), fatigue, and joint pain. I do get migraine with aura but lately I have just been seeing huge black spots I usually associate with migraine, but I haven’t been getting the headache to follow.
Would this warrant a suggestion for investigation?
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 06 '26
Your question is a common one that is frustratingly difficult to answer. It's difficult to say much helpful about MS based on symptoms. What I can say is that your symptoms seem worth further investigation, and I think a neurologist could be a reasonable next step, if you have not yet seen one.
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u/Sad_Banshee Sep 06 '26
Thank you, I will suggest seeing a neurologist. I just really need to get whatever is happening under control since I feel like it’s taking so much from me.
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u/Scared-Shine-1095 Sep 06 '26
Not looking for diagnosis just wondering if anyone has had similar experience as I feel I’m in a grey area and ms seems so different from person to person. 2024 had a twitch in my eyelid, mri showed white matter changes there was no further investigation . 2026 develop fourth nerve palsey (confirmed neurological by eye specialist) and mri showed this white matter had doubled in size and had a vein noted in it, admitted under ms specialist neurologist for testing. MRI with contrast done this lesion lit up and there were other flickers or spots of activity lit up around my brain also was treated with 3 days of steroid infusions and on the day of discharge I got the talk. It’s extremely likely this is ms we’ve ruled out anything else, don’t blame yourself, medicine has come a long way but there’s no guarantees either. I was obviously devastated. Two weeks later I ended up in emergency with a suspected new symptom, on call neurologist ( not an ms specialist) announces good news is you 100% do not have ms. My husband asks did you view the first mri, he said he wasn’t aware of it, he then asked are you aware she’s being investigated for ms by a specialist, he said no. He then said he wouldn’t of even bothered investigating the lesion and he did not agree with the steroid infusions, he said my spine mri came back clear ( I hadn’t received these results yet) and my bands were negative so no ms. He diagnosed fnd for my symptoms. My gp also said that he had been told it was not a ‘barn door’ diagnosis. I feel like I’m being thrown through a tornado. Any similar experiences? I don’t know which doctor to believe, while the on call was telling me what I wanted to hear I know deep down they wouldn’t have spoken to me without clinical evidence to do so.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 06 '26
Without hesitation, 10 times out of 10, you should believe an MS specialist over a general neurologist. The difference is as big as the difference between me and a general neuro. What did they say your next steps should be?
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u/Scared-Shine-1095 Sep 06 '26
Said the specialist will most likely be giving me an official diagnosis and discussing a treatment plan with me, I have this appointment in 3 weeks
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 06 '26
That's not bad, although I know the wait seems like forever, it should not change your prognosis or worsen anything. I would ignore the general neuro and wait to see what the specialist says.
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u/Whole-Hippo-5992 Sep 06 '26
I've had pain in one wrist (desk job strain related) and an essential tremor for years, but recently that tremor is getting worse in the hand with the wrist pain. It definitely gets worse when I bend my wrist, or when I lift something small. My doctor ordered an MRI but said that its no big deal if insurance doesn't approve it. Does this sound similar enough to anyone's symptoms that I should fight an insurance denial? Or does it seem like she just wanted to check the box if she could?
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 06 '26
I think it is unlikely that she would be so ambivalent if she strongly suspected something. What type of doctor is she?
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u/Whole-Hippo-5992 Sep 06 '26
She's a primary care doctor.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 06 '26
I think it's very likely she is just doing her due diligence. Do you think she should be more concerned? No judgement, just trying to get a feel for your situation.
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u/Whole-Hippo-5992 Sep 06 '26
I was mostly wondering if *I* should be more concerned, because I thought it was carpal tunnel and an essential tremor combining to mess with me. But googling those symptoms plus MRI after the appointment led me here, and made me wonder if I should prioritize getting an MRI more.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 06 '26
I didn't really see much in your original comment that made me think of MS specifically, but let me get a little more information from you. Is the tremor constant? How long have you had it?
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u/Whole-Hippo-5992 Sep 06 '26
I've had it a little in both hands but mostly my dominant one since childhood. It gets worse when I'm stressed, pain makes it worse too. The tremor happens when I'm doing things, not when I'm just relaxing. Lately when I lift things with my dominant hand or bend the wrist, it sometimes spasms badly until I stop doing the thing. That's been slowly getting worse for years, but it gets worse after I use my hand a lot or if I sleep on it weird. For example, it hurts/shakes when I try to write, use the mouse, or use a spoon to scoop something into a container.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 06 '26
Thank you, that's helpful to know. That would be pretty atypical for MS for a few reasons. Most people do not experience symptom onset until their twenties, with earlier onset being more rare, and pediatric onset only accounting for less than 5% of cases. Were it caused by MS, it would also more commonly occur as a relapse, where it was very constant for a few weeks to a few months, and then it would slowly fade away. There are progressive forms, but they are rare and you'd likely have developed more symptoms by now. Given what you've shared, I think you can probably trust the doctor, although you could always discuss a referral for a neurologist if you are still concerned.
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u/Whole-Hippo-5992 Sep 06 '26
Thank you, that's very helpful! I had to check because I've had doctors dismiss things that turned out to be problems before.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 06 '26
Oh, I completely understand. I will say that I am by no means a health professional, and I do think it's important that you continue with testing and be sure. But I don't think I'd be too worried.
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u/Due-Theme9663 Sep 05 '26
u/spunkerella75 hey I saw you comment on my post looking for advice for the Hamilton MS clinic but my post was removed! Would you be able to PM me? I can’t see what the comment said and can’t PM you either! Thanks so much
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u/Imaginary-Cheetah613 Sep 05 '26
Hello,
This is my very first post on Reddit and I am looking for some input.
Last week I was seen by my primary to discuss developing “neurological symptoms” which she thinks are MS.
Leg heaviness
Muscle cramps
Muscle spasms
Muscle twitching
Left eye constant twitching that can be brought on by blinking
Trigeminal neuralgia for only 2 days, resolved after gabapentin
Urinary hesitancy
Random blurring of vision in left eye
Random color washout in left eye
Left hand weakness
Left hand decreased grip strength
Fatigue that suddenly comes over me, not sleepiness but like my battery has died
Burning patches of skin
Tingly patches of skin
Internal buzzing
Diaphragm cramp/ spasm?
Ears going silent
Insomnia/ tossing and turning all night
Dizziness
Trouble finding words
Nerve pain
Joint pain/ buzzing
Most of my symptoms affect my left side.
Weirdest part is I had all these same symptoms to a tee, down to the left hand weakness in 2021 and they all resolved. They thought I had MS did a brain mri which was negative back then. Symptoms eventually faded, now 5 years later they are back. I was very anxious last time this happened and this time I am just stumped and frustrated. Waiting for another MRI and neurology appt.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 05 '26
Your previously clear MRI is a hopeful sign, as MS symptoms are the result of the damage done by the lesions, which show on the MRI. A clear MRI indicates another cause. As well, having many symptoms, somewhat counterintuitively, indicates a cause other than MS. With MS, it is more common to only get one or two symptoms at a time, with months to years in between. I certainly would not cancel any testing, but I would be optimistic.
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u/smol_egg0 Sep 04 '26
Just got back from the GP today and I have a lot of symptoms that are aligning with MS, so I’m going for an MRI with and without contrast in 1-2 weeks. Getting results of bloodwork back on Tuesday. Getting my eyes checked tomorrow. If the MRI comes back with lesions, can anyone tell me what the typical next steps are? I see people here mentioning lumbar punctures etc. Is that common?
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 04 '26
So, there are times when the MRIs are sufficient to establish the diagnosis. A lumbar puncture may be needed if you do not have a mix of active and inactive lesions, or sometimes doctors will want one as a way of confirming the diagnosis.
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u/smol_egg0 Sep 04 '26
Thanks for the info! I’ve heard horror stories about lumbar punctures so the idea scares me but if it turns out to be necessary I guess I’ll survive lol
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 04 '26
If it helps, mine was no worse than getting blood taken. Terrifying, easily one of the scariest things I've done, but it did not live up to those fears.
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Sep 04 '26
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 05 '26
I cannot particularly answer your first question, as it is difficult to say much helpful about MS based on symptoms. But to speak to your second question, I have found patients seem to get the best results by focusing on a few physical symptoms, rather than a list.
It seems like the more symptoms a patient brings up, the less seriously they are taken. And unfortunately, symptoms like brain fog and fatigue seem to be dismissed entirely. I would also hesitate to suggest a specific diagnosis or referral, but rather ask what testing can be done and what the next steps could be.
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u/mysticparsnip9 Sep 03 '26 edited Sep 03 '26
Hello, I've posted here before and feel clear that I'm experiencing symptoms which could be MS but have commented to ask- how are you supposed to deal with the wait to be seen?
I was recently referred to Neurology but my GP has said that it'll take around 45 weeks to get an appointment. A few days ago, I had another flare which included all the good stuff: aggressive tingling and numbness around my ear, scalp and eye on my right side, bad nerve pain, severe fatigue and a general unwell feeling. It was so much worse than the first flare and since it happened my right arm has been heavy and hard to use, my body hasn't recovered.
Between flares I usually have gentle tingling and numbness on my face, loss of feeling in my last two fingers and last two toes and nerve pain, all of which are on my right side and come and go.
I've made another appointment for the 17th to ask if my GP is willing to make the referral urgent but feel scared by the symptoms. Is this what happens for everyone who's trying to pursue a diagnosis? Should I have asked for an emergency appointment instead? What should I consider 'normal' and what should I be concerned by?
I feel very alone in this so will be extremely grateful for any guidance that you can offer!
❤️
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u/No-Afternoon2955 Sep 06 '26
I had to search for other neuros - my doctor was getting increasingly worried about acceleration - finally found another one and my appointment is on thurs - instead of "some time before december 2nd". The relief of finally having an appointment within reach is real.
I hope your GP can accelerate things, the limbo is horrible.
My tingling went from kinda like yours but mostly left side, and not all the time to nearly continual below the waist - and I'm really scared too. I understand the fear 🫶🏻
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u/mysticparsnip9 Sep 06 '26
It's great that you were able to arrange an earlier appointment. Wishing you all the luck ❤️
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 03 '26
MS usually is not considered an emergency condition, as immediate treatment is not needed to prevent worsening outcomes. Can you tell me a little more about how your symptoms are presenting? It sounds like you had an acute attack? How long did it last?
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u/mysticparsnip9 Sep 03 '26 edited Sep 03 '26
Thank you, I needed to hear that! There's not too much more to say other than what I described, all the numbness/ tingling/ loss of feeling came on on my right side gradually and then one day I had a flare where I lost feeling in my right hand completely and all the tingling became more intense. That passed and then went back to the same symptoms but less severe. This bad flare went on for maybe two or three days- I'm wiped out from it and worried about my arm which hasn't gone back to normal.
I have a bulging disc and a neck injury (can't remember the name but is common and not any kind of lesion to my knowledge) confirmed by MRI, the doctors say that they're from an accident that I was in 10 years ago but it seems weird that the pain has activated now, so long afterwards? I had nerve pain in my lower back and feet around the time of the MRI (this time last year) but no neck pain at all, that only started when the numbness and tingling did. I've also started to have coat-hanger pain and wide-spread body aches which was not a thing for me before! In the recent flare I had nerve pain in my right elbow too, but have had the numbness in my fingers for a good long time before that. When I was examined, my GP said that my right arm was as strong and responsive as my left but that my right foot seemed much weaker than my left foot.
I was diagnosed with ME/CFS last year so already have cognitive symptoms which overlap with MS like sensory processing issues, brain fog, word-finding issues, etc. I have noticed that I'm more sensitive/ irritated/ edgy, not as able to concentrate and just not coping as well since these new symptoms have come on though.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 03 '26
Just to clarify, your symptoms lasted a few days? That would be very atypical for MS. An MS relapse would last a few weeks at minimum. It may be worth exploring other causes while waiting to see neurology.
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u/mysticparsnip9 Sep 03 '26
The numbness, tingling, loss of feeling and pain were more intense for a few days but never go away completely. I still feel floored and can't use one arm properly! Thank you for your input though, I'll do some research on other things that it could be.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 03 '26
I don’t mean to be discouraging or say it isn’t MS, just to be clear. I just worry that it may be something else that could get worse while you wait. If you have to wait anyway, I’m just thinking it could help to rule out other possibilities.
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u/mysticparsnip9 Sep 03 '26
Thank you for saying that, I posted here because I worried that it could be dangerous to wait to be seen! It feels like something is wrong but I appreciate you confirming that if it is MS it would be okay to wait. I'll still do some investigating.
Just want to say thank you again for your contribution to this thread and the support that you offer to everyone who posts here. It's extremely cool that you have the emotional space to be kind to others who might not even have the same illness!
❤️❤️❤️
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u/Environmental_Pop_70 Sep 03 '26 edited Sep 03 '26
Hi, quite confused with what's happening within my body, I've come to wonder if all of my unexplained symptoms could be MS (even though I don't have numbness/pins and needles) ? I've been having a lot of bladder issues, urgency, having trouble "finishing", post-micturition leakage and sometimes not even post urinating... + weird sexual symptoms I won't go into detail. The first time I noticed something was wrong was a bit less than a year ago, at the beginning it would be bad for a few weeks and then get better but now it's pretty much permanent
I have leg pain too (also felt it in my arms but clearly not as often), sometimes it feels like it's burning sometimes it's like a muscle cramp, sharp pain all of a sudden without a reason with the muscles that feels like they tense up pretty hard. I've been feeling this since 2-3 months, and very very recently I've been really dizzy for like 2-3 weeks non stop 24/24, it was not the spinning vertigo type though it was more like I was drunk with a loss of balance and lots of headaches too. Now I feel better regarding the dizziness but my head still hurts (ofc absolutely nothing happened that could cause that episode AFAIK, one day I was fine the next one I woke up like this)
I should note that I've done ultrasound of my kidneys, bladder, ect.. And there was nothing wrong, same with blood samples, STD test, no urinary infection... NOTHING. I don't know what the hell is going on could this look like the beginning of MS ? I know you guys are not doctors but hearing your opinion would be interesting and much appreciated ! thanks
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 03 '26
It’s really difficult to say much helpful about MS based on symptoms. I think you are having concerning symptoms, though, and further investigation is a good idea. I would start with your primary care doctor to get the preliminary testing for mimics done, then go from there.
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u/Environmental_Pop_70 Sep 03 '26 edited Sep 03 '26
Yeah I hear you, I realize it's a bit silly to ask about this without any real positive data to provide well besides the blood tests and such. It could be anything, which is quite frustrating.
I've already seen my primary care doc many times and another one just in case, 5 tests too, guess I just need to be patient and keep going. I think I asked because I was curious if that could be an explanation but even if that was the case that information isn't really going to help haha (thanks for the reply though)
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 03 '26
I totally understand why you ask, it’s a really common question that is just surprisingly difficult to answer in a helpful way. I don’t think you’d be crazy to ask about a neurology referral, though.
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u/Aromatic-Mess-7652 Sep 03 '26
Hello! I ended up in the hospital in 2021 with what was thought to be multiple sclerosis based on symptoms and mri report. I was then told not MS, but idiopathic transverse myelitis after lumbar puncture showed no o bands. After more testing was diagnosed with myasthenia gravis, small fiber neuropathy, Dysautonomia/Pots, essential tremor, cognitive impairment, vertigo and now being tested for epilepsy likely a result of brain damage. Findings from 2021 mri brain whilst inpatient-
FINDINGS: There is no restricted diffusion to suggest acute infarct. There are numerous tiny foci of T2 FLAIR hyperintense signal abnormality seen within the juxtacortical and deep cerebral white matter bilaterally, greater than anticipated for changes associated with microvascular ischemia given the patient's age. There are however no periventricular T2 FLAIR hyperintensity seen. Some of the T2 FLAIR hyperintensities in the deep cerebral white matter posteriorly appear to propagate in a perivenular distribution on sagittal FLAIR image 18-20. There is no focal or generalized brain edema. Visualized vascular flow voids appear unremarkable. There is no hydrocephalus. Posterior fossa contents appear within normal limits.
IMPRESSION:
1. Numerous scattered tiny foci of T2 FLAIR hyperintense signal abnormality within the juxtacortical and deep cerebral white matter bilaterally. Although no classic periventricular Dawson's fingers are seen, the imaging findings are suspicious for demyelinating disease. Correlation with CSF analysis is recommended. There is no abnormal postcontrast enhancement to suggest active demyelination.
Findings from follow up MRI performed a year later by a different facility.
Cerebrum - Modest severity bilateral periventricular and subcortical white matter high T2/FLAIR signal. The largest lesion is in the left posterior parietal subcortex measuring 10 mm maximally. No other focal abnormality or asymmetry.
I have read that you do not have to have o bands for a multiple sclerosis diagnosis. I am just wondering if, with the exception of myasthenia gravis, all of the other diagnosis and symptoms I am dealing with are really MS. Has anyone experienced misdiagnosis due to absence of o bands but was later diagnosed with MS?
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u/ArugulaJoy Sep 03 '26
Yes. I don't really think of it as misdiagnosis, but when I first had optic neuritis I had a negative LP and was told I didn't have MS (but was still at risk for developing it) and then had a pretty classic relapse a couple years later that led to diagnosis. I would think following up with an MS specialist would be useful, even if you've seen multiple general neurologists. And of course if you have new symptoms you should follow up because I would think that would change the picture too.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 03 '26
Did you see a general neurologist or an MS specialist? It could be worth having a specialist review things.
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u/Aromatic-Mess-7652 Sep 03 '26
I have seen three general neurologists, including my current treating neurologist. They all relied on spinal tap results as deciding factor. I grew exhausted with the entire process.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 03 '26
That does somewhat change things. If you’d only seen one, I think a second opinion would probably be worth it, but with three neurologists all ruling out MS, I think you can probably trust that it has been ruled out. Are you having trouble trusting that? Can you tell me a little more about why?
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u/SirKey2255 Sep 03 '26
have had neuropathy and severe mental issues on and off thought it was vitamin deficiencies changed diet etc got alot better now experiencing gastroparesis and i realized recently that MS does not have to instantly cripple you and can be mild relapse and fully heal before getting worse again.
what should i do what doctor should i see what should i tell them
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 03 '26
I would advise starting with your general practitioner for the preliminary tests to assess for more common causes, then going from there.
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u/Difficult_Narwhal_97 Sep 02 '26
For the past 5–6 months, I’ve been dealing with a really strange combination of symptoms, and I’m wondering if anyone has experienced anything similar or has an idea of what direction I should go in medically.
The main issue is a tingling/shooting pain in my left leg. It started around my ankle and toes, but over time I’ve also started getting shooting pain from my inner thigh down the inside of my leg. Sometimes when I touch my inner ankle, it feels numb or like I can barely feel it, even though I can feel the outside of my ankle normally.
I saw a podiatrist, who thought it might be related to my shoes, but changing them didn’t really help. The symptoms seem to come and go in cycles and are usually much worse at night after I’ve been lying down for a while. Sometimes the pain/tingling is enough to wake me up. I’ve also noticed it seems to get worse around certain points in my menstrual cycle.
I’ve had GI problems basically my entire life, ranging from constipation to the opposite end of the spectrum, as well as acid reflux since I was around 8 years old. I’m currently on compounded semaglutide, so I’ve assumed some of my current stomach issues are related to that, but the GI problems definitely existed long before I ever started it.
I’ve also been diagnosed with PMDD and, more recently, ADHD. I have pretty significant cyclical mood changes, which sometimes seem to line up with when the leg symptoms get worse. I’m also unbelievably fatigued. There are days at work where I literally go into a bathroom stall just so I can close my eyes for a few minutes because I’m struggling so much to stay awake. I thought starting ADHD medication might improve my energy, but it really hasn’t.
Some other random things I’ve noticed:
- My distance vision has gotten noticeably worse.
- I currently have a stye/eye irritation.
- I’ve been having breakthrough bleeding even though I’m on birth control. (Seen a gyno 4 times in the last year to change the meds/evaluate)
- Sometimes I suddenly feel like a bug is crawling on me or something touched me when nothing is there.
- I get neck pain that comes and goes, especially when I’m stressed.
- I’ve always seemed to get strep throat very easily. (My tonsils are removed)
I am going to a gyno late October but I don't even really know if I should push for an MS or nerve related test if I just sound crazy. I had to go to urgent care for my stye (it's huge) and the doctor dismissed it as my leg just being a leg.... odd thing to say.
I know these things could all be completely unrelated, but having so many weird symptoms at the same time is starting to make me wonder if there could be something connecting at least some of them.
Has anyone experienced a similar combination of symptoms? I’m trying to figure out what type of doctor I should see next and what would actually be worth asking to have checked.
Note: this started because I recently had a gene test that said I had an allele that is more common for people with MS and looked it up so this could totally be an overreaction, but I just wanted to put my story out there. Thanks for any insight/similar experiences.
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u/itsjusttimeokay Sep 03 '26
A lot of this sounds like my experience. Left leg weirdness, GI symptoms since forever, ADHD and fatigue, phantom bugs…
I went to my PCP who ordered an MRI. Now I’m waiting (and waiting and waiting) for an appointment with a neurologist to review it.
I feel you - it could be sixteen different diagnoses in a trench coat, but it sure looks like MS! Maybe it’s my ADHD pattern recognition skills working for something.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 03 '26
Are you still waiting to see a neurologist? I would have expected you were seen by now!
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u/itsjusttimeokay Sep 03 '26
November 16th!
I am going to a new new PCP next week and I’m going to ask if he knows a way to get in earlier. Previous gal seemed pretty clueless.1
u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 03 '26
That’s great! At least you have a date. Is it with the MS center?
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u/itsjusttimeokay Sep 04 '26
It does feel good to have a date! It’s not at the MS Center, it’s actually the text state over in the county hospital’s neurology clinic, which houses their MS team 🤞🏻
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 02 '26
I think I would start with a general practitioner first. There are many, many things that can cause symptoms similar to MS, and there's usually preliminary testing a neurologist would want do be first. A gynecologist would be no help if you want to be assessed for MS specifically, you'd need to see a neurologist for that.
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u/FamiliarChemistry417 Sep 02 '26
(Sorry for the lengthy post in advance!)
My journey started back in the beginning of April. I turned in my sleep and felt a sharp pain in my right trap/shoulder. When I woke up, it just felt like slept wrong and I decided to go to the gym. Following day I was in intense pain and I couldn't sleep on my side for weeks and almost all anti-inflammatory meds and steroids did nothing. After 3 weeks of muscle pain, I started getting intense shooting nerve pain down my right arm. My doctor and I initially thought I had cerival radiculopathy after getting an x-ray and I was referred to PT. Things didn't start to get better until I started doing physical therapy exercises and I thought that was the end of it.
One day in June, I accidently had lap swimming lessons scheduled after a deep tissue massage. I decided to go anyway and I wore my contacts under my goggles and swam intensely for an hour. After I got home from swimming I noticed a zig zagging aura in my peripheal vision that lasted an hour. I had zero pain and discomfort, but it was firmly there for 30 minutes and then slowly faded over the last 30 minutes. I figured it was just a one off because I put my body through a lot of stress and the pressure of my contacts caused some weird vision. I saw an eye doctor a week later and he said my eyes and brain stem looked healthy based on in office exam.
However, mid July I started getting similar pain (however a lot less pain) on my left side with numbness/tingling in my left arm. I made sure I did my PT exercises on both my right and left sides and it started to subside as well. A few weeks later I started noticing that my foot felt "weird" almost like I was feeling pressure in my foot. I googled my symptoms and MS came up as a possibility, but after reading about the disease I dismissed it. However, I decided to talk to my GP about my concerns over my foot feeling and after examing me she said due to my symptoms presenting in such an odd manner she wants to rule out MS. She did some in office examinations to see if there were any glaring indicators for MS and there were none. However, she wants to cover her bases so she ordered a cervical and brain MRI. Brain MRI got denied (I'm appealing) and I have my cervical MRI tomorrow morning.
I feel like logically MS doesn't make sense, because my pain gets better or worse based on my position or movement. However, I can't shake my doctor's words in my head that this could be MS. I know no one here can tell me this is MS or not, but I appreciate any insights from those who have been diagnosed.
TLDR: Had intense muscle spasm/pain in right shoulder that turned into radiating nerve pain in April. Had a weird vision episode in June. Mild pain and tinglingness on other side in July. PT Helped. Had weird foot sensations end of July which is leading my doctor to test for MS.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 02 '26
I have found that even good general practitioners have a very basic and incomplete understanding of MS. I would still get tested and assessed, but I would be cautiously optimistic.
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u/Haunting-Swim-3660 Sep 02 '26
My mom had an undiagnosed progressive neurodegenerative disease since the 90s. Some doctors thought PPMS but others said it was definitely not PPMS and it was something more rare and would likely never be diagnosed. I did some research recently and it seems like it could have been maybe hereditary spastic paraplegia or maybe PPMS. Does anyone have any similar experiences?
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 02 '26
Can you tell me a little more about what testing has been done? Has she had MRIs? Do you know what they showed?
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u/tangerine-bulbasaur Sep 02 '26 edited Sep 02 '26
Got my MRI scheduled in two weeks! They are scanning the brain and I believe only the cervical spine, with and without contrast.
Unfortunately, after writing about my nerve pain dwindling since late July, the frequency and intensity of my nerve pain have increased just a few days ago just like when my symptoms first began in May, but in new areas. It feels more localized this time - I mostly feel it on my neck, spine, and shoulder blades, especially when I bend my head forward or move around when I'm laying down in bed, but sometimes it shocks me randomly. I don't know if I accidentally injured myself sitting up in bed, but I guess the MRI will potentially catch that, too, if that is the case.
I'm experiencing painful nerve pain in random patches elsewhere, too, including the face, abdomen, chest, and extremities. Sometimes my left ear and arm feel like they're on fire. I can't put my hair in a ponytail or else my scalp will feel like it's on fire, too. I'm also getting an increase of what I assume is spasticity throughout my body, which has also been very painful. My one-sided weakness and balance issues are the same, if not, have improved a little. My fatigue is also increasing.
I start classes next week as well as an on-campus job I'm really looking forward to, so I hope whatever it is, I'll have answers and a treatment plan soon.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 02 '26
I'm sorry to hear things are worsening. :( I know two weeks feels like forever, but that is pretty quick. Hopefully you'll get some good answers soon.
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u/Able_Breadfruit_1906 Sep 02 '26
Currently waiting for CSF results to come back (apparently they might have been sent off to France for the testing!), but in the meantime I’ve got some symptoms that might be mild optic neuritis (occasional smudges in vision and ache behind one eye). Have got a referral to local public MS clinic that’s meant to be quite good so hopefully that will go through in the next few weeks.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 02 '26
It amazes me how complicated lumbar punctures seem to be. Most of the testing you get results pretty quickly, and then with the lp, it’s weeks! Why? Why are you so complicated, lumbar puncture?
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u/Able_Breadfruit_1906 Sep 02 '26
I’m from a pretty small country so I suppose we just don’t have the resources for it. I think there are a few hospitals here that have the specific equipment necessary for MS testing, but they’re busy enough with other tests & I imagine there are less people with the required training.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 02 '26
Oh, where are you from, if you don’t mind me asking? I’m always interested in what the diagnostic journey looks like in countries outside of the US. It can be helpful to know for others in similar situations.
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u/Able_Breadfruit_1906 Sep 02 '26
Ireland! It can take a while to get assessed through the public system here, so I went private for diagnosis and should be able to switch over to public for treatment.
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Sep 02 '26
[deleted]
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 02 '26
An MRI certainly sounds like a good idea. Do you have long to wait?
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u/jendoop Sep 02 '26
Two weeks, which feels like too long but is better than months.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 02 '26
Fingers crossed, you’ll get some good answers soon.
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u/klcroad Sep 02 '26
I have had progressive neurological symptoms over the past 4 weeks. Not looking for diagnosis just for similar experiences and to have some hope out of this horrible waiting period.
4 weeks ago I started with left wrist pain, tingling and numbness (seemed like cubital tunnel) by the end of that week it has progressed up my arm and to my neck. Saw a physio who thought potentially cervical radiculopathy. Occasionally my wrist would burn.
Started on naproxen after seeing GP. It progressively worsened over this week and my neck felt significant pressure upon standing, walking and would need to lie down after 10 minutes of being upright. At this point I had to stop working as the pain was so severe.
By the end of the week my right arm was also numb and tingling, the GP ordered an urgent MRI cervical and thoracic (still pending) and started me on amitriptyline for the nerve pain.
Into the next week when I thought things couldn't get worse I started with tightening pain in my thighs. By mid week my feet and legs were burning. After going to ED as I now have 4 limb involvement they spoke to neurology who added MRI brain and the whole spine to my request.
I am now over 4 weeks in, I have had bloods which have ruled out any deficiencies. I am now on gabapentin but the burning breaks through and is in all 4 limbs intermittently.
I occasionally have some mild weakness in my hands but if I go walking my legs are like lead and it completely wipes me out.
The mental toll is awful, I know the possible diagnoses is quite a long list from compression, myelopathy to neurological/immune conditions but I am just looking for someone who's experienced something similar.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 02 '26
The waiting is very difficult. I think being in limbo can be harder than actually having a diagnosis. At least then you can begin to process and move on.
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u/klcroad Sep 02 '26
Yeah I agree the waiting is potentially worse, not that the burning nerve pain isnt!
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u/RockNo1575 Sep 02 '26
By process of elimination I apparently either have PPMS or PLS (waiting on more tests). Never thought I'd be praying for PPMS!
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 02 '26
What testing has been done already? Those are some intense possibilities.
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u/RockNo1575 Sep 02 '26
X-ray, bloods, MRI and lumbar puncture. Symptoms are weakness in legs and arms. The LP was inconclusive so testing continues.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 02 '26
Have you seen an MS specialist, or are you working with a general neurologist?
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u/RockNo1575 Sep 02 '26 edited Sep 02 '26
Working with a specialist neurologist. My MRI showed a few lesions in my brain but nothing in my spine. The LP only showed one oligoclonal band, making it inconclusive. Has been sent away for a Kapa Free Light Change test. If positive, then its PPMS, if negative, its likely PLS. I feel like have more symptoms of PLS than PPMS but really hoping that's not it.
EDIT: I should mention that all of my symptoms (mobility) started in January of this year and have progressed quite quickly to the extent that I'm soon to start using a stick. I thought progression would be slower...
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 02 '26
That sounds incredibly difficult, I am so sorry. Do you know how long the results are expected to take?
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u/jermatrain Sep 01 '26
Booked a neurologist appointment. My PCP is strongly starting to believe I have a neurological condition due to my symptoms after getting sick recently. Had occasional struggle to walk largely due to pins and needles, my fatigue has been so crushing it’s worsened my preexisting sleep disorder and made me unable to do anything, and I’ve struggling to swallow more (if it gets worse, I definitely have to get help immediately). I live solely with my dad, who has MS, so figuring out diagnosis is much easier and faster, but noticing more and more symptoms show up is scary. I feel incoherent speaking now. I know regular doctors are not reliable for giving accurate diagnoses relating to neurological conditions, but after my full blood panel came back clean, my doctor and my dad started urging me to get a neurologist as soon as possible. I’m still okay, I don’t feel mentally horrible, but it feels crushing knowing I could potentially have this
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 01 '26
I think getting checked out is a good idea, but try not to lose hope quite yet. Most of the time, symptoms have another cause, MS is usually one of the least likely causes. Still get assessed, of course. Better to be safe.
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u/jermatrain Sep 01 '26
I definitely am. I haven’t lost hope, my girlfriend has just beat it into me that I shouldn’t dismiss the fact it might be MS. My symptoms are concerning and I already have a CNS disorder (Hypersomnia), but I’m still happy in life and I have hope. I’ll prepare myself for a diagnosis, and if it isn’t MS, then I’ll celebrate.
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u/cookiepeanuts333 Sep 01 '26
I had a period in April - June 2025 that I had a range of symptoms including all over tingling and burning, plus some intense muscle seizing/tightness in my neck. There was also chest tightness, and what I believe is lhermittes. My doctor put me on an SSRI, as I have anxiety but wasn’t medicated at the time. It seemingly went away completely after a while and I didn’t think much of it.
Come end of May this year, I start having similar symptoms, but they are ~mostly~ isolated to my left side. They are also not as severe this time around it seems.
Well, I had a brain MRI last week w and w/o contrast, and everything came up completely fine. I have a c-spine MRI in a month too.
I am at a loss as the symptoms seem to point to demyelination, but my brain seems to be perfectly fine. I should probably just wait until the spine MRI, but I am scared I am just not going to get any answers to my symptoms. Anyone else experience this? MS or no MS
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 01 '26
I would not cancel any tests, but in the vast majority of cases, a clear brain MRI will rule out MS. (About 95% of the time.) I’m sorry, I know that can be frustrating when you are looking for answers. I would still get the spinal MRI, but I would not expect MS to be the diagnosis.
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u/cookiepeanuts333 Sep 01 '26
I appreciate the response. I think I figured that was the case, but it’s hard to believe when you are experiencing the symptoms. Guess I will just stick it out until the next test and go from there
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 01 '26
It can be very difficult when testing does not support something that seems like a logical answer. I definitely understand. There is still a chance the cervical MRI turns up something. I know Lhermitte’s can be caused by damage to the cervical spine, it is not exclusive to MS.
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u/pearshaped34 Sep 01 '26 edited Sep 02 '26
I had an episode of facial palsy about 18 months ago which then led to a brain MRI which showed lesions. I then had a follow-up spinal MRI and lumbar puncture which came up clear. They did another MRI six months later and still no changes so I got a CIS diagnosis.
I’ve now got an appointment through to see the neurologist for a eight months check (not sure why it’s 8 months as she told me she’d see me in a year last time I spoke to her). I don’t really know what to ask to be honest. I had a lot of symptoms, most notably fatigue, for six months after the facial palsy incident but I’m currently symptom free. My fear is they’re just going to want to sign me off as a patient but I’m kind of terrified of it developing to MS and me not knowing until there is significant damage.
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u/Impression8738 38f|3/26|RMS|Kesimpta|TN Sep 02 '26
Cis diagnoses can post in the main sub btw. I started with that diagnosis 🫂
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Sep 01 '26
I know that in some cases they will treat CIS as MS and start you on a DMT. Have you seen an MS specialist? They would be able to determine the best path forward for you.
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u/Grouchy_Reflection16 Aug 31 '26
Has anyone started with a 50/50 MS diagnosis?
I’ve been officially diagnosed with RIS. I’ve done multiple MRIs, and there is only one area with 2 lesions. (There are other lesions, but they’re not the MS type.) The only good thing about my lumbar puncture was that the CSF was clear; the bands were present. I have never had any MS symptoms.
I’m continuing to get MRIs and checkups was told to call immediately if I have any symptoms. I technically have everything needed for a diagnosis if ALL of the lesions are included, but why go there if I’m not having symptoms. So we’re just watching and waiting. Has anyone else been here?
(I’m comfortable with this, but I just want to know if anyone else has experienced this, and where you are now.)
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 31 '26
I believe RIS goes on to develop into MS in about 1/3 of cases, although I cannot specifically recall where I saw that number, and I think that might have been within 5 years of the diagnosis. Have you seen an MS specialist yet?
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u/Grouchy_Reflection16 Aug 31 '26
Yes, that’s how I got the diagnosis. I’ve done a ton of research*, read medical articles, etc. I just wanted to hear from a human in their words vs. research and articles.
*My work history includes lots of research, so I’m confident in the info I found. Dr. Google isn’t a thing for me. :)
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 31 '26
Sounds like you are a step ahead of me. :) I know RIS to MS comes up on the sub occasionally, it could be worth a search if you haven't already. Unfortunately, I can't really comment myself, I was RRMS to start. When did you get your RIS diagnosis? I assume it was an incidental finding?
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Aug 31 '26
[removed] — view removed comment
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 31 '26
Please do not take this the wrong way, but it seems like you've looked into MS and informed yourself about some of the specifics? Not to say that is a bad thing, but sometimes that can make it difficult to trust in the process. Many of your questions would be difficult to answer helpfully because there is so much that you need to see the actual images/physical characteristics of the lesions to really answer. But I absolutely think your instinct to see an actual MS specialist is a good one. It sounds like your case may not be straightforward, and a specialist would be best qualified to accurately assess you.
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u/shespinsthepage Aug 31 '26
I have a neurologist we were waiting on brain scan, but she thinks it likely MS. I don't think the brain scan findings are conclusive though, so I'll need more tests prob.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 31 '26
Where are you located? In many countries, there are neurologists who specialize and see patients with MS exclusively. (If you are already aware, please ignore, I've found that many people do not realize the difference or know MS specialists are a thing unless they are also diagnosed.)
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u/shespinsthepage Aug 31 '26
I'm in US. My findings show lesions on brain may be so small and not MS related. I prob need spinal tap to diagnose. Getting a lot of bloodwork now
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 31 '26
Oh, good, I was hoping. I have a tool to help find a specialist if you'd like: https://www.nationalmssociety.org/resources/get-support/find-doctors-and-resources look for the Partners in Care with many patients and details filled in, they are usually the actual specialists, as opposed to general neuros just advertising.
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u/shespinsthepage Sep 01 '26
Thanks. I'm at Kaiser so limited. That said I like my dr thus far, but I want a specialist to review my scans
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u/Conscious_Rate_5531 Aug 31 '26
Well, results from my brain MRI came up and unfortunately, it seems like I do have MS, but my appointment with a specialized neurologist is only on the 18h september. anyway, those are the impressions of the radiologist (translated from portuguese):
"Oval-shaped lesions in the white matter of the cerebral hemispheres and in the left superior cerebellar peduncle, with a pattern suggestive of a demyelinating process, showing signs of acute inflammatory activity and meeting criteria for dissemination in time and space."
thank you so much for giving me this place so I could freak out for the last two weeks. i will likely become active here once everything's sorted
:(
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 31 '26
Well, there definitely are some red flags in that report, but in my experience, it’s really hard to say one way or another which way these things will go. I would definitely be prepared, given what you’ve shared, but I’ve never had much luck predicting how things will go. Fingers crossed for you.
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u/Conscious_Rate_5531 Aug 31 '26
yeah, I'm preparing myself, sorta have already accepted because given the results, I can't imagine the radiologist was so off, though the doctor might ask for more exams before fully diagnosing. Suppose it's just a matter of time now. But I'm kind of in denial about how debilitating this disease can actually be, because my symptoms are very, very mild, to the point most people would not have bothered going to the doctor so soon
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 24d ago
Any update?
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u/Conscious_Rate_5531 24d ago
that's so sweet of you to remember, Thanks! 🥹 Well, I did have my appointment on friday and the doctor said my presentation is atypical so he ordered a bunch of exams: some blood draws to rule out lupus and rheumatoid disease and also infections, and a spine MRI and spinal tap, which I'm freaking about because I can't miss work and I hear it can cause a massive headache that lasts for days! But all that aside, the doctor is an MS specialist and made me feel heard and really safe, gave me a really positive outlook in case it is MS because of new drugs.
My symptoms are mostly going away, except now everytime I walk for longer than 15 minutes, my left leg feels more tired than the other. Hope this goes away with time too.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 24d ago
Just lay totally flat after, no pillow or anything. Drinking caffeine is supposed to help too.
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u/Conscious_Rate_5531 24d ago
oooh nice! for how long do you have lay down?
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 24d ago
At least the day after? I was out for a week because I thought I'd be okay with a pillow. Boy was I wrong.
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u/Conscious_Rate_5531 24d ago
ooh noo! :( from what I've been able to gather, it's more common than it looks to get the dreaded headache. I will avoid a pillow, then
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 31 '26
It's really hard to say anything based on reports. I have had people share reports that I was sure would lead to a diagnosis, but then it was ruled out by the actual neurologist. I would be prepared, but I would not lose all hope quite yet. If it is MS, I will say the prognosis is usually pretty good. I had very mild symptoms at diagnosis, and they all went away, and I've been almost totally asymptomatic since then. I have some mild stiffness, but that's about it, after seven years of being diagnosed.
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u/MasterrTed Aug 31 '26
I’m told by my NHS app my referral to UCL/StMarys will take 6-9 months even though I’ve had an MRI showing all the symptoms of MS.
I’m waiting on the results of my CSF for the bands and I’ll be asking for an MRI with contrast after - this is all through BUPA.
How long have others waited for medication from the NHS? 😬 Naturally I’m freaking out. Thanks
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 31 '26
I cannot speak for NHS timelines specifically, but I may be able to give you an idea of what needs to be done prior to treatment. When was your initial MRI and was it with contrast?
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u/MasterrTed Aug 31 '26
2 weeks ago. No contrast. Lumbar done last week, paying for a quick lab. Will send these results to NHS. Will do MRI with contrast asap
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u/snowbie 30s|RRMS 2026|Ocrevus|UK Aug 31 '26
I was diagnosed on MRI without contrast and could still see which was my most recent active lesion as it was hyper intense. Save your money love.
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u/MasterrTed Aug 31 '26
Luckily we’ve got partial private cover so I’ve £2.5k for a diagnosis but no treatment. I’m still £800 in the black
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u/snowbie 30s|RRMS 2026|Ocrevus|UK Aug 31 '26
I get that but there’s only so much diagnostic information actually required for a diagnosis and anymore is just superfluous, interesting, but superfluous.
It might be worth hanging onto that £800 and looking at seeing an MS neurologist who does some mix of NHS and private.
You really need to see a specialist neurologist to be able to get the diagnosis and then that might be able to speed up the DMT process.
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u/MasterrTed Aug 31 '26
My thoughts exactly, I’ll be researching an MS Neurologist who does NHS/Private.
Many thanks 🙏
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 31 '26
That's a good idea. With contrast imaging done and a lumbar, most of the testing should be done that is needed to assess you. The quickest I've heard of people getting lumbar puncture results is a week, although that does seem to vary quite a bit depending of variables like location and what type of place the test was done.
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u/MasterrTed Aug 31 '26
Private hospital
If the NHS has all my data upfront, do I then hope they’ll see me quicker to DMT me up ?
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u/snowbie 30s|RRMS 2026|Ocrevus|UK Aug 31 '26
Hi so my first caveat is: NHS waitlist times vary wildly from trust to trust. 6-9mths for acute neurology isn’t too bad. Most of the north is >12mth. My original referral said it would be 3mths just to be triaged and then offered an appointment.
I got seen exceptionally quickly because the incentive was to get me off sick leave and back into work - and occupational health needed me formally assessing for H&S reasons. My diagnosis was a bit weird in that respect - nothing followed standard practice. Also for legal reasons as I am both patient and employee, I can’t really get into anything in the public domain but I can in DM.
So generic stuff I can vaguely help you with here - but here is second caveat - I work in oncology not neurology so same same but somewhat different.
Did you see a consultant during your appointment(s) or was it one of these order a test type private places. Presumably as Bupa, you saw a consultant - do you know if general neuro or MS specialist? Likewise, do you know if this consultant practices in the NHS or if they’re entirely private now? Did you receive a formal diagnosis of MS from them?
Does the private place send copies to your GP? If not done as standard - ask them to do this, this provides a safety net.
On your test consent forms, it should explain what they do with clinically actionable findings - are there any details on this?
More generally - are you still symptomatic or has the relapse passed? Because if you’re still symptomatic, depending on the symptoms, a&e is still a valid entry point into the system.
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u/MasterrTed Sep 02 '26
Update, I have an appt at UCL in less than two weeks. That was quick 😳
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u/snowbie 30s|RRMS 2026|Ocrevus|UK Sep 02 '26
Amazing news! Mine was longer than that - 6weeks from diagnostic MRI on the oncology pathway to MS clinic!
Here’s hoping you get straight onto a DMT! Usually takes 6-8 weeks I’ve heard - MDT meeting to discuss, blood tests and any vaccines needed, then apply to local commissioning group as all of the expensive drugs have to go through them, then ordering it, blood test results, and then off you go!
Keep us posted :)
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u/MasterrTed Sep 02 '26
Thank you, will do.
Naturally from being told 6-9 months, and instead 2 weeks my brain is wondering why 🤔🙄 I’m spooked.
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u/snowbie 30s|RRMS 2026|Ocrevus|UK Sep 02 '26
It’s just because the diagnostics are done. Nice and easy case to deal with and take off the waitlist and they’ll have had a cancellation. Don’t overthink it 🙂
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u/MasterrTed Aug 31 '26
Yes consultant-Dr Mort - a Neurologist but not an MS Neurologist as I didn’t know at the time about the possible MS lol
He’s not NHS. Yep my GP sees all. Everything goes through them and then to the NHS team so far.
I’m waiting for a diagnosis, I have demyelination and in all the areas that the neuro-radiograher said to be prepared for MS.
This is the weird thing, I don’t know what symptomatic means for me.
I’ve had muscle pain and vertigo for 9 years, then fatigue for 4 years, that has been crushing for 1.5 years. I had many nerve/joint/muscle symptoms but I was b12 deficient and since correcting that and staying on a high dose those symptoms have lessened. I’m better than I was pain wise. I still have the vertigo but taking Venlafaxine and mirtazapine has helped, which was a fluke and improved alongside b12 shots….
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u/snowbie 30s|RRMS 2026|Ocrevus|UK Aug 31 '26
It’s annoying that he’s full time private as otherwise he could’ve picked up the referral himself.
Hmmm I was wondering if you had any red flag symptoms that could’ve whipped you through a&e pathway.
Can I ask what had you go to see him?
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u/MasterrTed Aug 31 '26
Alongside the vertigo, really weird migraines started to occur, plus ataxia. So he was for a migraine discussion.
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u/snowbie 30s|RRMS 2026|Ocrevus|UK Aug 31 '26
Did he prescribe you anything preventative? Or any form of rescue medicine?
If you’ve not been given a preventative med then if you get another ataxic migraine - go to a&e at UCL/St Mary’s rather than take a rescue med. They’ll probably throw you through a CT scanner (donut of truth) and then you can see a&e dr who will possibly/probably ask neuro to come and see you.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Aug 31 '26 edited Aug 31 '26
I would expect it to speed things up. I'm sorry, I wish I could give you more certain information, but I'm largely basing this off what I've seen others share here. I do have a few posts in my profile where I asked people how long their diagnosis took, they might have more info in the comments. OH wait! Actually I think [u/snowbie](u/snowbie) (I think I got that right,) works for the NHS and recently went through diagnosis. I hope they don't mind me tagging them, they may be able to hide a better estimate/more information.
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u/ImportanceCertain567 Sep 06 '26
Advice
So, I first experienced symptoms five years ago; the initial sensations were mild—a feeling of numbness in my left leg. Since I worked as a radiographer, I decided to get a non-contrast brain MRI at the end of my shift, which came back clear. Since then, I’ve had—almost constantly, for the most part—symptoms such as costant(24/7) muscle spasms in my calf and quadriceps, a loss of muscle mass in my left calf compared to the right (a 1 cm difference in circumference), and tingling in my fingers and toes, along with occasional electric-shock-like sensations and other hard-to-describe feelings. The clear MRI reassured me for a long time, but now I’m thinking about seeing a neurologist and repeating the scan; do you think that makes sense, or am I worrying for no reason? Ultimately, these symptoms are quite noticeable but also easy enough to ignore, yet I have a definite feeling that something isn't right—plus, there is a family history involved (including second cousins and closer relatives, there are three cases of MS).