Misdiagnosed MS as ME/CFS?

anciendaze

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About 20% of the patients treated by doctors specializing in MS do not meet strict clinical definitions of MS. I don't say all "CFS" patients are like this, but it is definitely possible for thousands of patients in this diagnostic gray area to be labeled ME/CFS patients by mistake.
 

Valentijn

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About 20% of the patients treated by doctors specializing in MS do not meet strict clinical definitions of MS. I don't say all "CFS" patients are like this, but it is definitely possible for thousands of patients in this diagnostic gray area to be labeled ME/CFS patients by mistake.
Especially if we never got a brain MRI as part of the ME/CFS diagnostic process :rolleyes:
 

barbc56

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I do know of one person whose diagnosis changed from me/cfs to MS. However, I would think it would be the exception rather than the rule.

For my step mom who has RR MS, it took years before she was diagnosed. The first doctor to mention she should be checked for MS was an opthamogist she saw because of vision difficulties. I don’t think she had MRIs before that but I'm not positive. I do know she was never diagnosed nor was it mentioned that she might have me/cfs. She's actually doing relatively well. She has had it for twenty years, so she is very lucky in that respect.

Are the lesions always apparent at the beginning of MS?

Its really too bad that an MRI isn't a high priority when ruling out other disorders. Did the IOM mention having an MRI when excluding other medical problems?

Barb

ETA For that matter, any other sources such as the International Consensus document. That may not be the right name.
 

WillowJ

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I notice a lot of similarities between MS and ME/CFS. Is it possible some ME/CFS folks might actually have MS? What are the more significant differences in symptoms? Is there a definitive test for MS? Any thoughts ....
MS is supposed to cause one-sided temporary paralysis, I believe, whereas ME patients often have bilateral problems (one leg might drag sooner than the other, but if keeping walking they may both drag.... or both arm weaken with use: in MS it may not be related to use).

The PEM of ME seems more severe than that of MS, and to my knowledge it does not include the kind of cardiopulmoary difficulties we seem to find and experience in ME.

Other than that it seems really similar. Most neurologists when meeting me not knowing my history want to test me for MS (if they know I have a CFS diagnosis, most typically they are looking for the fastest way to get me out the door with an excuse for why I do not actually need a neurologist despite multiple referrals in my file for 2-3 different things, occasionally from a panicking PCP... once of of the neuros looked scared once, too, before the brain scan).

My brain and neck scan is always stated as fine, meaning negative for MS and brain tumor (though they may find other things, but nothing diagnostic of anything in particular). I have had brain scans 3x. Never had a spinal tap, though.

I want to see your docs, @Inester7 . I can't keep a neuro, as I can't find one who can be civil to a no-diagnosis patient or a CFS-labeled patient, either one. Well I did have one, but insurance prevents me from seeing them. I can either have a decent neuro or a decent primary care doc, not both. :lol: And the decent neuro comes with a very scary ER, tho I did meet one nice ER doc there.

Of course it's likely also possible to have both ME and MS.
 

Valentijn

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MS is supposed to cause one-sided temporary paralysis, I believe, whereas ME patients often have bilateral problems.
I was diagnosed with a three-week "complicated hemiplegic migraine" (sans headache) several years before ME onset, where the right side of my body went a bit numb. It wasn't proper paralysis, though using that side of my body was difficult when I couldn't detect sensory feedback properly. I tended to trip on stairs if I wasn't careful, and I couldn't carry paper in my right hand without either dropping or crushing it, because I couldn't feel how firmly my fingers were pressed against it.

An MRI was clean then, though homocysteine was a bit elevated and a single normal dose of folic acid prescribed by a neurologist triggered an intense 15-minute bout of vertigo, after which the numbness was gone. But I've also noticed a couple other ME patients here mention hemiplegic migraines/episodes over the years.
 
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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.
 

WillowJ

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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.
Well you should rely on a doc for diagnosis, and not other patients you met on the internet. But you knew that. ;)

But yes, whatever it is we have that is being diagnosed as ME or CFS, it's not unusual to have strong neurological symptoms. That doesn't mean there isn't a rare disease out there that covers some of us. Or whatever else. It does mean it's not easy, and out of the 2-12 (or however many) diseases being put together as ME/CFS, some could be like this.

I understand that. Totally get it. But I have to believe something useful will happen.
 
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I haven't been diagnosed with me/cfs or ms, but like you @Kiwi Jack, many of my symptoms seem to fall in line with ms...and at this point my condition has continued to worsen with periods os leveling off.

Maybe, in our lifetimes, tests will be discovered that can give a definitive diagnosis rather than just relying on symptoms.
 

alex3619

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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.
 

jimells

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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.
The folks in the in-between group, do they respond to MS treatments, or do they receive no treatment like the rest of the ME population?
 

alex3619

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The folks in the in-between group, do they respond to MS treatments, or do they receive no treatment like the rest of the ME population?
I have no idea. However if you look at MS forums you will see they use many of the same things we do. What they have that we don't are approved drugs. They also respond better to exercise.