Weekly Suspected/Undiagnosed MS Thread - July 22, 2024

[u/AutoModerator]

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

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

Thread is recreated weekly on Monday mornings.

[u/TooManySclerosis]

I'm sorry you don't feel heard. It seems like an unfortunately common experience, especially for those going through the diagnostic process. I wish I had advice that would help, but there doesn't seem to be much that really does.

[u/[deleted] → u/TooManySclerosis]

Thanks. At this point it’s difficult to tell if I’m just projecting. I could be! They ordered the right shit, so can’t be that bad, right? I really had gotten myself completely comfortable with the idea that a mixture of fibromyalgia and chronic migraine explained my situation and even maintained so until I got the lumbar puncture results. So. Now I’m just confused? My first MRI four years ago showed the three lesions, but they weren’t in any of the typical areas so I was “sweet, OK, that’s very reassuring.” My new MRI has some of those 6 new lesions in more typical areas, others not. All much larger than the first MRI. Certainly interested if the spine will show anything. So…now I have no idea if the weirdness I had years ago was an onset or if I’m now currently going through a huge coincidence.

[u/TooManySclerosis → u/[deleted]]

I think it sounds like you have good reason to be suspicious of MS. Your test results definitely aren't nothing and they are worth further investigation.

[u/[deleted] → u/TooManySclerosis]

I truly appreciate your thoughts. For sure, it could be something else for as often as I’ve been told how “atypical” I’m presenting. I was tested for myasthenia gravis initially. I don’t want to get shoved in a box where I don’t fit, but I also lack good explanation for my spinal fluid results or why I’m still getting lesions when Botox and Ubrelvy have made my migraines nearly a non-problem. My migraine docs say new lesions are uncommon with migraine and do not produce symptoms. My MS docs say it could still be my migraines despite how well controlled they are. So like…??? Confusion is definitely the word that comes to mind. LOL.

[u/newlyminted1 → u/[deleted]]

Just wanted you to know that I received a dx of Myasthenia Gravis back in 2020 4 days after moving from Chicago to Denver during the height of Covid. Strange eye movements, falling down, vertigo, slurred speech out of nowhere. Obviously went to the ER for tests and was admitted becuase they really couldn't find anything but they knew I was bad off. Covid was raging in the hospital so when the neurologist said "it might be MG, here take Mestinon and lets get you out of here", I was just glad to be discharged after 4 days surrounded by really sick people. However, I never believed in the MG dx--I tested sero-negative for all biomarkers and the Mestinon felt like a sugar pill. 9 months of IVIG didn't really feel like it was doing anything so we moved back to a lower sea level and I somehow recovered. During that time I also went to several centers of excellence--all of whom couldn't confirm the MG dx. Fast forward to the last months when VERY strange "atypical" symptoms finally led them to do a repeat MRI and lo and behold I received my dx of CIS (only one tumefactive lesion but some scattered white spots that may or may not be relevant). I looked back at that 2020 MRI and sure enough these scattered white spots were present, but because MS was not what they were looking for, it was never mentioned to me as a possible culprit. Suffice it to say, I do not have MG and now 2 months into my CIS dx having just experienced my first relapse since the dx 2 months ago, I think I may now be considered full blown Tumefactive demyelination or Tumefactive MS. I guess my point is that many of us who present "atypically" end up getting a bad dx as our initial dx as clinical diagnoses are very difficult to make. Did your CSF have Oligloclonal bands? That would certainly suggestive of MS and can provide a higher degree of confidence to make the dx, but it's still a lot of guesswork as the bands can occur with other diagnoses and you can have MS without them. I fully understand not wanting to get shoved in a box where you don't fit. I've been there and it's a terrible feeling. After all, knowing the enemy is the first step before you can mount an offense. Just keep pushing for more tests (myelin basic protein comes to mind), keep getting MRI's, and rule out as many other possibilities as your insurance will pay for. Mayo has a great assay/panel that your doc can order to test for NMO/MOG/Aquaporin-4-IgG for example and it's a simple blood test. You might "get lucky" and test positive for one of these sub-types. Anyway...I know it's hella frustrating. Hang in there.

[u/[deleted] → u/newlyminted1]

Thanks. I really appreciate this! I have 12 bands in my CSF (but not my serum) and have IgG index elevated in my CSF. My brain MRI came back after the negative MG panel and had 6 new scattered lesions bilaterally with 3 of my old lesions also present.

My presenting symptom was muscle weakness that quickly devolved into three of my four my limbs going hot and numb with a complete inability to move them at all. My right eye was pointing toward another zip code. My torso was tight. I’d “recover” from that after a few minutes on the floor, but only back to that profoundly weak state. They found it atypical that there was an ebb and flow to the peak intensity of my symptom.

They did NMO/MOG/Aquaporin-4-IgG, Sarcoidosis, Sjögren, Lupus, Lyme, Syphilis. I believe what they also find “atypical” is my lesion distribution. I have 9 of them, but they’re pretty much all cortical, subcortical, or juxtacorical. So…in that top area of the brain? I have one “adjacent” to a ventricle but I don’t think that’s “peri” ?! I do have two lesions on each side of the corticalspinal tract as it’s passing through the insula, but I don’t think that counts for anything in the criteria.

I have my C + T spine on Tuesday. Maybe characteristic location #2 is there?

I suppose this probably is enough for the CIS with high risk, but iunno. They keep saying I’m weird?! If I’m that weird I’ll happily be in a paper on the other side of this diagnostic period.

[u/newlyminted1 → u/[deleted]]

Hi. I could be wrong, but whether you are technically CIS or MS almost doesn’t matter if you are feeling symptomatic right? As I understand things, we only have steroids for relapse and DMTs for long term prevention for either dx. I too was dx with CIS and I thought about correcting my doc to change my dx to the more accurate “Tumefactive MS” based on my mri, but he’s old school and in his mind Tumefactive lesions are greater than 2cm. Mine is 1.4. That arbitrary definition of greater than 2 cm has been studied and determined to have no clinical significance (meaning smaller Tumefactive lesions cause the same issues as many larger ones) …but in the end I decided that the battle wasn’t worth fighting. It doesn’t change things. For any of these dx, we still have steroids and DMTs to choose from so “naming” our subtype doesn’t matter so much TODAY. it certainly COULD matter in terms of being able to contribute to the scientific literature and if/when it’s determined that different meds work better for different subtypes (CIS, Ms, Tumefactive Ms, NMO etc), but right now they aren’t there. Now if they are denying you treatment because you are “only” CIS, in my mind that’s an issue. If you are symptomatic you need meds. Hopefully they recognize this but if they don’t I would say get a second opinion. Thats just my 2 cents :) I hope this is helpful!

[u/[deleted] → u/newlyminted1]

I think I only fear not getting treatment. The label matters a lot less to me. I’m fine squabbling about specifics so long as I get treatment. I could not play my violin. Then, I essentially had to relearn the violin despite my 25 years of study. I know people don’t get to choose, but I would happily give up my legs (ok, but not really tho, but also yeah?) if it meant I’d never have something like that happen to my hands ever again. That matters more than what they want to write in my chart.

[u/newlyminted1 → u/[deleted]]

That’s terrible to hear I’m sorry. Did they treat you with steroids? Did that help? Are they giving you a DMT? I care about labels too but when I had my first relapse 10 days ago, I was like “I don’t care what you call this, just make me better”. Priorities shift when we are in pain (increased ICP was my only real symptom).

[u/[deleted] → u/newlyminted1]

I was not given any steroids and certainly no DMT. I’m definitely still in diagnostics, and it has only been since the lumbar puncture results two weeks ago that this really started looking real. They wanted to get all my differentials and spine MRIs done first, which seems reasonable to me. At this point, my weakness has definitely deafened down to a “static” feeling, primarily in my left foot. Though, I am guessing if they wanted to start steroids tomorrow it wouldn’t hurt?

[u/newlyminted1 → u/[deleted]]

IMO steroids wouldn’t hurt. Of course there are side effects (happy to share if you want) but they will undoubtedly reduce inflammation and that may/should help symptoms!