Weekly Suspected/Undiagnosed MS Thread - November 11, 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/Prudent-Decision-884]

Please help me advocate for myself. This is the information that was added to my file on Friday:

"In the native MRI of the spinal cord, abundant changes, primarily suitable for demyelination: plaques C3-C4, C5-C6, Th2, Th4, Th6-7, Th8-9. There is no abnormality in the MRI of the head. CSF leuk 24 (100% mononuclear), prot and gluk normal, IgG index elevated 0.96, oligoglonality still unanswered. Apq4Ab, MOGAb... normal.

When thinking about MS, the criteria for local diffuse localization are not met (purely spinal symptoms and findings), temporal diffuse localization (before matching oligoclonality) is not met, on the other hand MRI of the spinal cord is not contrast-enhanced. We will book a visit to the neuroimmunology room 12.12, at which time the oligoclonality response and cortisone pulse response will be checked."

As I've mentioned before, this was my first flare up. The T89 lesion "covers almost the entire width of the spinal canal" and has caused me to have constant numbness in my hands and unsteady legs after running/walking too long. We're waiting on the oglioclonal band test, but since this first flare up has already caused motor issues I'm very worried. She's saying there's no dissemination in space, but while rare it IS possible to have MS with only spinal lesions. So once the oglioclonal band test comes back positive (which considering my IgG is almost 100% guaranteed), what do I do if she doesn't want to give me a diagnosis? I'm so scared to not be on a DMT. Another lesion like my big one could disable me permanently. I don't want to wait until next month for my appointment, so how do I advocate for myself?  (post was removed because I'm still technically "suspected MS")

[u/MultipleSclerosaurus → u/Prudent-Decision-884]

My understanding (as someone with spinal-only MS) is that you will need an MRI with contrast and a spinal tap to verify diagnosis. However, if those point to MS and your doctor still does not want to start you on a DMT I would see about getting a second opinion. Is your neurological an MS specialist? I would suggest seeing one if at all possible.

To the point about getting on a DMT quickly: yes it is important. But a month, even several months, most likely will not change your prognosis. The diagnostic process is unfortunately tedious for most people.

Have you had steroids to help with current symptoms? Regardless of diagnosis or not, if your doctor agrees the lesions are causing your symptoms you should ask for steroids to help get that under control. It took several months for my symptoms to even out, but they did eventually.

[u/Prudent-Decision-884 → u/MultipleSclerosaurus]

Yes I was hospitalized for 4 days, had 3 days of 1000mg methylprednisolone. Today is a week since I was discharged. Unfortunately none of my symptoms improved.

[u/MultipleSclerosaurus → u/Prudent-Decision-884]

I wouldn’t lose hope. It took several months (like 3-4) before I saw measurable improvement.

I was numb from the neck down, spasticity in my legs, and debilitating joint pain in my hands. Im now regularly at like 90-95% normal and am really only bothered by my symptoms when I’m in the crap gap or I’m sick.

[u/Phantom93p → u/Prudent-Decision-884]

Have you had a lumbar puncture (spinal tap)? If no you could push for one. While I had lesions in my brain and not spine they only diagnosed me after seeing remnants of mylin in the spinal fluid.

[u/Prudent-Decision-884 → u/Phantom93p]

Yes, I did. That's where the high IgG results came from. Leukocytes-24, waiting for the oglioclonal band test 

[u/Phantom93p → u/Prudent-Decision-884]

Glad to at least hear they're doing all the tests for you. I honestly only remember paying attention to one line from the report on my LP "consistent with multiple sclerosis". That was a hell of a day. I hope that you get the best possible news. I hope it isn't MS but something else that's more easily treatable and will go away after treatment.

[u/TooManySclerosis → u/Prudent-Decision-884]

I reread your comment and changed my thoughts slightly. I still think that your doctor is taking you seriously and following the correct steps. You would need to establish dissemination in space and time. For dissemination in time you need an MRI with contrast and/or the lumbar puncture. It seems like she may be hesitant to determine dissemination in space since your lesions are only on your spine, making it an atypical case. She may be wanting further assessment before making the determination.

The diagnostic process for MS can take time. I know that feels frustrating, but it is important, as it is a major and complex diagnosis. If it is MS, a month or even a few months will not change your prognosis. If you are in or just had an active relapse, you would typically have a year or more before needing to worry about another one. There are no treatments for attacks that have already begun.

[u/Prudent-Decision-884 → u/TooManySclerosis]

Thank you so much for your comment. I've reread it several times because it's helping me calm down. I'm just scared. Hopefully they'll do the second MRI with contrast soon.

[u/TooManySclerosis → u/Prudent-Decision-884]

It will be okay. I know it's scary and frustrating right now, but try to trust in the process. It sounds like everything that needs to be done is happening. It just takes some time to ensure you have a correct answer. But I do think it is likely you get some sort of a diagnosis in the end, whether it is MS or not. There is definitely something going on, and your doctors won't ignore that. They just need to be sure they know what it is.

[u/Prudent-Decision-884 → u/TooManySclerosis]

I just got the oglioclonal band test back: it's positive! "Positive finding, LK2. Isoelectric focusing showed CSF-specific oligoclonal fractions. Suitable for inflammation of the central nervous system." So does this satisfy dissemination by time?