Multiple Sclerosis

Discussion in 'Fibromyalgia Main Forum' started by lillieblake, Jun 11, 2008.

  1. lillieblake

    lillieblake New Member

    Last week my neurologist said he still believes I have MS even though the spinal tap came out negative.

    What is the connection between MS and Fibromyalgia?

    Does anyone here have both?

    I am having a hard time wrapping my head around both of these diagnosis. If I have MS does that mean I don't have Fibromyalgia?

    Thanks - Lillie
  2. SnooZQ

    SnooZQ New Member

    Sorry to hear this news, Lilly. I don't have the answer to your question, however ...

    When you have some free time & energy, research "low dose naltrexone." It is an older drug with newer uses at tiny doses. I've known several people with severe MS who have found it to be their miracle -- much more effective, and MUCH MUCH cheaper ($30/mo. vs. thousands/mo.) than many of the currently in vogue MS meds.

    Have heard (but not personally known) some folks with fibro have also been helped with LDN.

    The catch is, it's not one of the standard meds currently rxd by most docs these days for either MS or fibro. So finding a doc to Rx it, if one is interested, is the trick.

    Best wishes to you.
  3. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Both neurological, but affects different parts of brain.

    I would get a second opinion. Your doc might be right, but without a positive test and you think you might have FM instead, I wouldn't start treatment for one without knowing for sure. One treatment might be harmful if you actually have the other.

  4. lillieblake

    lillieblake New Member

    I've done some reading and I honestly don't believe I have MS.

    But I am positive I have fibromyalgia.

    The MRIs done on my head show white spots - neurologist thinks this are either MS or strokes.

    I see my cardiologist next week - I think I have had little strokes. I also have very high blood pressure uncontrollable by drugs so far.

    Basically, my life sucks. Just like almost everyone else on this forum.

    God bless us. We are good people and don't deserve this!

    Love, Lillie
  5. Empower

    Empower New Member

    My doc says all my symptoms are that of MS

    Have had 2 MRI's, both negative

  6. mariee

    mariee Member

    Hi Lillie,
    I have been dx. w. both MS and Fibro.
    The MS dx. came after the MRI.
    I got very ill (thougt it was the flue at first) where I had vision problems and loss the use of my left arm....that is when I had an MRI.
    My MS is relapsing/remitting. But my Fibro symptoms are ongoing...
    My neuro treats both. I am not able to take MS meds...
    My health is much better, thanks to many things I have learned here....
    So, YES, you can have both....
    Talk to your neuro about treatment for both.
    Good luck!
  7. Rafiki

    Rafiki New Member

    Many of us with ME/CFS have hyperintensities on our MRIs - it's a common finding in ME and, given the overlap, I would think it's not uncommon in FM.

    Many with ME are misdiagnosed with MS for a time. MS should only be diagnosed with a positive MRI (not non-specific hyperintensities but hyperintensities with specific characteristics in specific areas - mine are in the MS area but don't look like MS lesions), positive Evoked Potentials and positive Lumbar Puncture. These three tests are necessary for a diagnosis of MS. The only possible exception would be a clinical picture that just screamed progressive MS with a marked loss of functioning.

    There are common ways in which MS presents which are different from FM but neurologists seem unable to remember this. Have you had optic neuritis? Have you had bilateral trigeminal neuralgia? Have you lost bowel or bladder control? There is also a specific type of gait but that can be difficult to distinguish from gait changes in FM. Pain is not usually a presenting symptom of MS... and on and on.

    I've been diaguessed with MS, too, years ago, but I don't have it. I declined the lumbar puncture because the onset and course of my illness is classic ME. Later on, I did develop some conditions common in MS.

    One does not want in incorrect MS diagnosis as treatment is either nothing or heavy duty med.s. A great many people with ME, FM, Lyme, etc. have been misdiagnosed with MS.

    I would urge you to research the diagnositic protocol that should be followed when diagnosing MS and the difficulties inherent in teasing apart the diagnoses of MS and FM.

    I wish you the best of luck sorting through this.

    Peace out,

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