Misdiagnosed MS as ME/CFS?

TrixieStix

Senior Member
Messages
539
Likes
897
I recall reading something from an MS specialist a long time ago. Some patients clearly have ME, others clearly have MS, but in between are a group you could diagnose either way. Its not clear cut.

As a case in point, ME patients have brain lesions on MRI, though the pattern (especially over time) tends to be different to MS. I think this is a grey area in medicine that needs more research. However my knowledge of MS is limited. Things may have advanced in MS diagnosis more than I think they have.
My me/cfs specialist / infectious disease doc told me that she isn't convinced I don't have MS eventhough the MS doc said she didn't think I do. I have 2 abnormal areas on my brain MRI which the MS doc said could just be from migraines. However my me/cfs doc said there is no way they (MS docs) can say such a thing with any certainty.


I just found out my NK Cell function is very low at only 4% a common finding in me/cfs but is also found in MS in some cases.
 

Belgiangirl

Senior Member
Messages
108
Likes
79
Interesting and thanks for the feedback. I was considering MS because I have some paresthesia, neuropathy, numbness, plus my laundry list of other neuro and brain related CFS symptoms. But I did have a brain MRI a few years ago which did not display anything abnormal. I have not had any profound one sided numbness, or numbness that lasts more than a few minutes after shaking it off somehow. And after 14 years of these symptoms they are not getting any worse, unfortunately not getting any better either. So I assume I can rule out MS.

I rejected my original diagnosis of CFS 14 years ago, primarily because I was offered no therapy, no answers, which felt like no hope. I embarked on a campaign of trying to discover an alternative diagnosis and primary source issue that I could work on. But in all these years, money, and alternate theories and therapies, nothing has resolved. I'm back to CFS, ME, or whatever they call it these days. It feels hopeless.

I started taking low dose naltrexone 10 days ago, hope that will provide some relief, nothing so far, but early days.

I appreciate your feedback on this issue.
Your post goes ways back I see but your symptoms do not necesarrily indicate MS, MS can be ruled out by MRI and/or lumbal punction (and or spine MRI). MS is nothing that can be missed actually (I mean once the right test has been done).
It is not the result of symptoms as in many chronic diseases but something you can distinctly diagnose based on biological findings.

Your list of symptoms possibly points to dysautonomy / neuropathy , back or spine problems, connective tissue disorders (auto-immunity), ...
 

Belgiangirl

Senior Member
Messages
108
Likes
79
I have one white matter lesion myself - the origin is unknown. Showed up on MRI already when I was around 20 or 25 years old (don't know when for sure).
I only did find this out this year, I was extremely shocked since some of my doctors or specialists said "rule out MS" and I said it was definitly ruled out when I was 18 - tough it seems diagnostic criteria has changed (brain stem spots was the criteria than according to that neurologist).

I got a lot of suggestive symptoms: cognitive decline, peeing at night all the time, vision disturbances, coordination trouble, sometimes also nerve trouble (numbness etc). Tough happily no second WML showed up.

But ... some thought I suppress because it won't help me anything further: when a second WML shows up, the diagnosis will be MS.

I do even know my spinal cord has never been checked for demyelisation but theoretically there could be spots too and if that is the case it means I do have it, also a lumbal punction hasn't been done to rule it out.
In my country they do think about the cost/benefits balance a lot and since it is public money they are very careful with spending... so it is possible that I have MS already or one day I got this diagnosis too, but I hope- that it is a part of what is probably SLE and what has been recently suspected as a possibility but not yet confirmed.

Now I do supply with vitamine D.
 
Messages
11
Likes
23
I had incidentally found WMLs found for the first time in July of last year, two. One 7mm on right anterior temporal lobe. The other is described as a 'small punctate focus' on the anterior right frontal lobe. Size not given, and there seems to be a lot of preliminary speculation about it being 'not clinically significant.' Which I take to mean they've been speculating whether I would qualify as a case of CIS or MS or whatever. They are still monitoring my lesions, maybe eventually they'll say hey it's MS. I would love to say they've ruled out MS totally, but I don't think they have. I can definitely tell you the ME/CFS came first though, so if it is MS it's very possible that maybe the ME led to it? Or maybe it's just taken this long (17+ years since ME diagnosis) to become this prominent.