Is CFS a type of MS?

Discussion in 'Fibromyalgia Main Forum' started by wasatch, Feb 16, 2007.

  1. wasatch

    wasatch New Member

    I was diagnosed with CFS 20 years ago. Three months ago, I started having neurological symptoms, like slurred speech, weakness and clumsiness. Now I have a diagnosis of multiple sclerosis. My neurologist, an MS specialist, thinks I may have had MS all along.

    I told him, "In 1987 I had a bad case of the flu, and I felt sick every day for FOUR YEARS before I had ONE 'normal' day. You think that could be MS?"

    He said, "Yes. A viral illness can trigger an MS experience like that."

    It seems totally implausible to me - but it got me wondering, is CFS an unusual manifestation of MS?
  2. karinaxx

    karinaxx New Member

    it is an intresting question and if we would know the answer, we would know more about CFIDS.
    Many do believe that CFIDS is also an Autimmune D. and there fore it is possible to delvelope both, since Autoimmune D. often come in clusters. i also observed that many here are not only diagnosed with FM or CFIDS, but over time get diagnosed with several other Autoimmune D.

    It could of course be that many are not diagnosed with the right DX. from the beginning, since MS usually takes some time to be dx; it is most of the time not clear in the beginnig.

    Me too i have had CFIDS since over ten years, with a slow but progressive onset and started, after a ABX treatment, with MS like symptoms. I have not yet been checked again, but there was a MRI done two years ago, which did not show anything.

    Pesonally i do think that both this deseases are deseases of the CNS and have an autoimmune part. Same as in CFIDS there is for a long time the idea around that MS is caused by a virus and EBV and HHV-6 have been both implicated in MS as well.All MS patient experience a worsening of their symptoms with flus or the flu season, which seems to implicate that there is a similar problem with the immune system and the way which we deal with enviromental factors.

    What are your most disabling symptoms?
    did you see a change in symptoms over the years?

    I did and in the moment it is the stiffness and problems with one leg,knee, which seems to get like paralized, plus extreem muscle weakness and breathing problems and of cours all the other typical CFIDS symptoms.

    by for now,
    like to hear more and the treatment which you will start.
    At least you have options now and will get more support from the medical establism.

    karina



  3. winsomme

    winsomme New Member

    there is alot not yet known here.

    i read recently on the lymenet message boards about a report that is supposed to be on ABC i think about Lyme disease and MS.

    the thing is nobody really knows what MS is. other than there is significant immune damage to the myelin in the nervous system.

    whether that is caused byh an infection like lyme or herpes virus, etc, nobody really knows. like CFS, MS could have many different causes.

    there was a team of researchers at Vanderbilt that believes the bacteria chlamydia Pneumoniae can cause MS and they have been trying antibiotics to see if people get better.

    also, people with CFS do have reports of abnormal MRIs, so we really don't know.

    one of the main treatments for MS is interferon beta which in addition to modulating the immune system is also an antiviral. is one of the reasons it helps because of its antiviral affects?

    and finally there is a neurologist in the UK that recently did gene expression studies on CFS. his name is DR johnathan kerr and if you read the reports from the recent CFS conference they report his findings.

    one article i read mentioned that he is trying to get a study of the same interferon beta on CFS patients to see if it helps!

    so there are alot of really great questions here that don't have concrete answers.

    i know if you read over at lymenet, there are some patients that were diagnosed with MS, but later were treated with antibiotics for Lyme and got better (i don't know how much better).

    maybe it would be worth trying to see an LLMD (lyme literate medical doctor).

    www.lymenet.org

    go to the "flash discussion" section. and LLMD are doctors who go above and beyond mainstream doctors in their analysis and treatment of lyme. you will need to see one of you want to seriously investigate lyme. there is a section on their site that will help you find one near you if interested.

    please let me know if you have any questions.

    thanks
    bill
  4. winsomme

    winsomme New Member

    if you go to LymeNet right now, saturday afternoon, there is a thread called "MS or Lyme".

    it's about a woman who was diagnosed with MS 9 years ago who now is thinking it might be Lyme.

    it also tells you where to go to get more info on this topic.

    www.lymenet.org

    go to "flash discussion" and then "medical questions".

    let me know if you have trouble.

    thanks
    bill
  5. Clay2

    Clay2 New Member

    When I got 'the flu' last April, it came with lymphocytic colitis and spots in my lungs that were biopsied to be inflamed lymph tissue. My liver tests went all haywire for a while too, some indicating auto immune problems. The lung and liver have cleared up, but the colitis is back.

    Is it just a coincidence that I got all these autoimmune problems the same month as CFS? I don't think so. My pulmonologists don't think so.

    My GI guy could care less about any organ outside his area, my gut, ditto all my other doctors, of which there have been over a dozen this last year.

    How can anything so obvious that affects so many people (albeit in different ways, like MS) be so invisible to modern medicine?
  6. MsE

    MsE New Member

    My sis has MS. We compare notes every now and then and our symptoms are very close; however, she says there is a definitive test for MS. As far as I know there is no definitive test for CFS.
    But I suspect a whole big bunch of these "grey" illnesses are related.
  7. wasatch

    wasatch New Member

    Thanks for the responses. I will check out the Lyme postings. Here are a couple of additional thoughts...

    Since getting diagnosed with MS, I have been getting ALL KINDS of support - from the medical community, my friends and colleagues, even the pharmaceutical company that makes Avonex (for obvious reasons). It is a TOTALLY different experience than when I was diagnosed with CFS. (You all know what that is about!) It just seems so strange - the two diseases feel so similar to me. In fact, according to my MS doc, they're indistinguishable! Yet I was treated so poorly when it was called "CFS," and now I'm getting all this support. I'm the same person, with the same psychological response. Yet with CFS, I was a wacko PITA, and with MS, I'm getting tons of TLC. The mind boggles!

    It also seems odd that my CFS doc never considered MS, and my MS doc thinks is never was CFS. I guess it's human nature - to see the world from a narrow perspective. It's easier to split than to integrate. But it's so frustrating...
  8. roge

    roge Member

    thanks for sharing your experience in terms of how you were treated when you had CFS and now with MS. While this doesnt surprise me or anyone else here , it was interestin to read this none the less.

    I get so angry still when i hear things like this , same person and same symtpoms but because one has MS as opposed to FM or CFS, then the road is much easier for support and understanding - utter bullshit

    peace
  9. Slayadragon

    Slayadragon New Member

    Maybe MS is a type of CFS.

  10. monicaz49

    monicaz49 New Member

    both ms and cfs scare me. Whatever the flock it is it has destroyed my life. Sorry, i had a VERY rough day. Very.
  11. Slayadragon

    Slayadragon New Member

    Sorry about your bad day. I hope you feel better soon.

    Best, Lisa

  12. monicaz49

    monicaz49 New Member

    Thank you Lisa!
    That was nice to read.
    :)