Misdiagnosed Multiple Sclerosis (MS) as ME/CFS?

[WillowJ]

Wow, what a wild story.

Actually I know someone who says their MS medicine is making them worse. Of course there are other meds, but neuros tend to have a favorite treatment and be really stubborn about it. Some days I want to send the majority of neurologists back to school.

Though that's not the only kind of specialist I've had insist I should take a certain medicine that didn't necessarily have any good science to back it up. Maybe we should just send make sure that the training people take in order to maintain licensure, covers what makes good evidence, how to read a research paper, treating patients as individuals, etc.

 

[jimells]

neuros tend to have a favorite treatment and be really stubborn about it.

They sure seem to love prescribing anti-seizure meds for migraine without worrying overmuch about the adverse effects. Personally, I worry very much about taking any medication that causes possibly severe withdrawal symptoms - what happens if I'm suddenly cut off from receiving it?

Because I refuse these treatments, I am denied any treatment, except for nine Imitrex pills a month, not nearly enough most months.

 

[Justin30]

My Neurologist straight told me that they only know about 30% of whats going in the brain.

I appreciated his honesty and now am requesting further testing.

Its like if you live in Canada or the UK its like pulling teeth to get tests done and it is very difficut to find Drs that actually know anyyhing about rare diseases.

Although if you live in the US and have insurance then you can see one of many top drs that treat any condition. You could have most of your visit to Mayo covered and/or walk into to the NIH for testing.....

 

[Andielyn]

Although if you live in the US and have insurance then you can see one of many top drs that treat any condition. You could have most of your visit to Mayo covered and/or walk into to the NIH for testing.....

This is not true. Nearly all insurance plans have in-network physicians/hospitals. Some will pay a small percentage for out-of-network care, and it varies wildly.

Having said that, I live in a location where one of the very best hospitals--on par with the Mayo--is in-network and my experience with doctors and my condition has been disappointing. I saw their "best" neurologist for my bad migraines and with the exception of getting on injections for migraines, the rest was subpar. He shot down the idea of doing a brain scan and turns out my PCP later did first a CT scan and saw abnormalities then did a MRI. He blamed my fatigue on the sleeping aids I'm taking, despite the extreme fatigue far preceded the use of sleep aids. He chalked my PEM on being a woman of menopausal age and said he is tired after he exerts himself too, and I need to get more exercise. Trying to explain that "more exercise" makes me sicker was scoffed.

 

[panckage]

He chalked my PEM on being a woman of menopausal age and said he is tired after he exerts himself too, and I need to get more exercise

Oh God my old family doctor was this way. What a dumb dildo!

 

[Sushi]

You could have most of your visit to Mayo covered and/or walk into to the NIH for testing.....

It's not so easy. Most who go to Mayo seem to pay huge amounts out of pocket. And you have to be accepted for a trial at the NIH.

 

[anciendaze]

Has Mayo changed? Previous reports indicated they were still following old guidelines on CFS provided by CDC. Multiple patients have reported getting large bills for a series of tests which ended up showing nothing unusual. This was interpreted as "illness all in your head". To reach those who specialize in things like paraneoplastic diseases it helps to have a lumbar puncture showing leukocytes in CSF and blood tests showing rare autoantibodies -- before you go in the door.

 

[Glycon]

My Neurologist straight told me that they only know about 30% of whats going in the brain.

Your neurologist GROSSLY exaggerated how much we know about the brain!

I have personal investment in this topic, since the onset of my illness was accompanied by extremely severe neuropathological symptoms that (understandably) directed my (extremely competent) doctor down the path of examining me for every demyeliating disease that could possibly present with my symptoms. My sense is that the only reason I was not diagnosed with MS is that my brain MRIs all came up clean. MS is pretty much by definition an illness that involves macroscopic brain damage. On the other hand, the peripheral demyelinating diseases that my symptoms suggested (Guillain-Barre, etc.) are all rather acute, whereas my illness isn't.

It would be amazing if at least the paradigmatic cases of ME did not involve either something causing (mild, reversible) damage to the peripheral nervous system, or made the body think that the peripheral nervous system is being damaged. Or both. I believe there is some research suggesting that at onset of ME the body is simultaneously fighting inflammation of the peripheral nervous system and causing that very inflammation through some autoimmune reaction. (Don't quote me on this, however.)

 

[PennyIA]

I do know that I have been tested a couple of times for MS, but only via non-invasive methods (MRI)... which can sometimes show issues In MS. However, I'm also aware (and so is my doctor) that only 40% of MS patients have lesions visible on the MRI.

So, the fact that I don't have lesions is not conclusive evidence that I don't have MS.

I'd push harder on it and ask for a spinal tap... but the truth is that while I've struggled with some MS-similar symptoms, the muscle failure and weakness is VERY short-term and not months-long kind of weakness/failure. The fatigue could be anything. And some of the other parathesia and POTS related symptoms seem to be milder than they used to be. It doesn't feel like a strong enough case for MS for me to feel like pushing harder on verifying that it's not that.

I also think I've got enough family history and just-about-related-to EDS or other connective tissue disorder that I could potentially land there as well. Again, doctors are ruling it out on slim evidence and no one has done the genetic testing for it... so, maybe it's that.


That said... if we ever get a diagnostic test for ME/CFS - or dauer-perpetuating-state or whatever they end up calling this... and if I do not get diagnosed with that test? Then I might push harder for non ME/CFS testing.

 

[flybro]

i wondered about MS, v.similar symptoms, plus nan and grt aunt had it.

my GP has mentioned a few times this year about ConnectiveTissueDisease which is main component of .EDS

ihve 2 daughters with symptoms. CTD & EDS has been metioned to eldest by med team too.

 

[PennyIA]

Although if you live in the US and have insurance then you can see one of many top drs that treat any condition. You could have most of your visit to Mayo covered and/or walk into to the NIH for testing.....

My experience at Mayo cost around $50,000 out of pocket after insurance and included getting CBT/GET treatment.

I wouldn't recommend them at this time...

 

[taniaaust1]

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.
.

Not getting worst I dont think rules out MS as MS is like ME and can have different outcomes eg improve itself, staying the same or getting worst.

 

[taniaaust1]

Many people get diagnosed with atypical MS, that's when they dont quite fit the normal MS diagnostic criteria.
....

I've come across many ME people who have one sided symptoms at times, myself included. I had one sided foot drag for a while. I've also had other MS symptoms at times eg lost ability to feel heat in certain places for a time so was at burns risk.

MS and ME have different type of brain lesions. Ive had several MRIs over rhe years (at least 4) and never have had MS brain lesions. I have no dr watching me for MS.

My ME exhaustion is worst then the fatigue that the MS people Ive come across in real life have had.

As 40-60% of ME/CFS patients have been wrongly diagnosed, there is good chance that we have people here at the forums who may turn out to have MS and not ME.

 

[Justin30]

My experience at Mayo cost around $50,000 out of pocket after insurance and included getting CBT/GET treatment.

I wouldn't recommend them at this time...

Wow ok then....its BS how mayo isnt keeping up with the times. Irregardless after talking to family in the US I was told its similar to the situation i that you have to pay for most good treatment unless you have ME.

 

[TrixieStix]

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.

I was just evaluated for MS at the MS Clinic of a great hospital. I was told I do not have the disease. I asked the MS specialist about the possibility of having MS with no lesions visible on a brain and spinal MRI and was told yes a small % will not have visible lesions to begin with but will go on to develop them. She said that if a person such as me has been having symptoms for 2 years that I would almost certainly have developed lesions by now. That the longer a person goes with no lesions the less MS is likely.

 

[PennyIA]

I did end up having 5 MRI's within a single calendar year (at that time mis-diagnosed with a stroke - they kept thinking they would find MS lesions or evidence of a stroke - but didn't). I haven't had one since as unless I find NEW symptoms that scream MS or stroke, I don't want to pay for yet another test that shows nothing.

 

[Glycon]

I've come across many ME people who have one sided symptoms at times, myself included. I had one sided foot drag for a while. I've also had other MS symptoms at times eg lost ability to feel heat in certain places for a time so was at burns risk.

Not all MS comes with "one sided symptoms". Besides, one-sidedness, unless pronounced, is sometimes of no clinical significance at all.

As 40-60% of ME/CFS patients have been wrongly diagnosed, there is good chance that we have people here at the forums who may turn out to have MS and not ME.

This. Also, there are a few other neurological diseases that must be considered (some of them quite exotic and of uncertain cause).

 

[TrixieStix]

I did end up having 5 MRI's within a single calendar year (at that time mis-diagnosed with a stroke - they kept thinking they would find MS lesions or evidence of a stroke - but didn't). I haven't had one since as unless I find NEW symptoms that scream MS or stroke, I don't want to pay for yet another test that shows nothing.

My path to the MS docs was also triggered by "stroke like" symptoms. It started with sudden marked vision changes and then a week later part of my face went paralyzed (not bell's palsy). ER docs didn't think it was a stroke or TIA but it was so confusing why these things were happening. I was in some sort of major neurological flare. I even was having uncontrolled jerking of my head, arm and leg. Now that MS has been ruled out along with a bunch of other things and I've been diagnosed with ME/CFS I realize that it can cause the symptoms I experienced and have read accounts of others going thru same thing with their ME/CFS. There has been research into the similarities between MS and ME/CFS. The cause of MS is still unknown as well. I personally have no opinion on that subject as I have not researched the info out there but I came across this the other day while reading something. link is below...

http://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-11-205

 

[PennyIA]

Yes, I wouldn't be surprised if MS isn't just a flavor of something else. Right now with the current diagnosis method you aren't supposed to have MS and ME/CFS at the same time. But if they are separate conditions with separate triggers, whose to say you can't develop a dauer like state from being hit with MS?

 

[Glycon]

Yes, I wouldn't be surprised if MS isn't just a flavor of something else. Right now with the current diagnosis method you aren't supposed to have MS and ME/CFS at the same time. But if they are separate conditions with separate triggers, whose to say you can't develop a dauer like state from being hit with MS?

You must remember that MS is itself an umbrela term, under which multiple diseases are classified (many of them either controversial or lacking in definitive biomarkers). What makes MS MS is that there is damage to the central nervous system. If there is anything that all the clear cases of ME/CFS have in common, it is almost certainly something else. Though it could be a related condition (or conditions). We need to know whether there is any characteristic impact on the nerve sheaths, whether it is inflammatory, whether the inflammation is autoimmune, etc., etc...

It is quite possible to have all and only classical symptoms of ME/CFS and have MS instead. Indeed, if you have demonstrable damage of the central nervous system, then MS is by far the more sensible diagnosis in such cases. Whatever the true mechanism(s) of ME/CFS, they clearly tend to impair one's functionality in ways that resemble a chronic peripheral neuropathy.