anyone with MS?

Discussion in 'Fibromyalgia Main Forum' started by lsaxton65, Jul 18, 2008.

  1. lsaxton65

    lsaxton65 New Member

    If you do have MS do you alos have FM and CFS? The reason I ask is because I was asked by a family member if I had MS ruled out as DX. I do have some symptoms of MS that are not of FM or CFS. I was going to bring this up to my dr before I went for my next visit, but I wanted some input from you guys first.

  2. marti_zavala

    marti_zavala Member

    I had a spinal tap and it was negative.

  3. lsaxton65

    lsaxton65 New Member

    I have problems with my eyes. It's difficult for me to read something because the words jump around...I call it eye jitters. Also I have pain in my eyes when I move them. I always contributed that to being a headache in my eyes, but I never really got a headache, only pain in my eyes. I have ocassional problems with incontinence. I have seen specialists for these things before, but that was before my dx of fm and cfs.
    [This Message was Edited on 07/19/2008]
  4. optimiss

    optimiss New Member

    I had an MRI last monday w/o contrast and it showed multiple small lesions so another MRI is being done tomorrow morning w/contrast to confirm MS. I have had MS symptoms along with all the FM stuff for years but have never been tested. I guess I may have something new to accept, which means new, different drugs. At least I'm finally getting more pieces to the puzzle which is my body!
  5. kellygirl

    kellygirl Member

    Had EEG, MRI and Lups, MS and I guess others were ruled out. Lots of times a dx of FMS is a disease of exclusion, though we do have the tender point pain.

    One of my first symptoms of CFS and FMS was my legs feeling like jelly and eventually my legs didn't seem to get the message from the brain on how to walk.

    That's when I was tested for MS. Research has discovered MS comes from HHV-6, a herpes virus, and I think they still think that is the same virus that causes CFS. Not sure of the update on that one.

    My Son-in-Law has MS and he has the same cognitve problems and anxiety problems that we share.

    Lyme is another one. I have been tested, but on this board, from reading some of the posts, I don't know if the tests were accurate.

    I just keep going until I can't then go to the doctor and see what's up. Hope for the best.

    But knowledge is power and just stay informed. Know thine enemy.

    Sometime I still dread that I may have Lups when some of the symptoms flare up, like rashes.

    Sorry about the editing, but my brain is still waking up this morning.

    [This Message was Edited on 07/20/2008]
  6. Rafiki

    Rafiki New Member

    to diagnose MS.

    I have many (more than a dozen) lesions (some in MS related regions) on an MRI done years ago. That is not unusual for someone with ME and, as far as I can tell, for people with FM.

    A diagnosis of MS should not be made without a positive LP - Lumbar Puncture aka spinal tap.

    I have trigeminal neuralgia and had a long ago episode of eye pain which could, in hindsight, be misunderstood as optic neuritis both of which are very common in early MS. In addition, one of my pupils does not always contract properly which also could indicate MS. I also have neurogenic bladder, another possible MS symptom. My TN was caused by a bone spur resulting from TMJ, my eye pain was from a sinus infection and my pupil abnormality is a benign condition called addies (sp?) pupil. My neurogenic bladder remains a mystery as do many other neurological symptoms. ME is a neurological condition.

    When standard diagnostic protocol is not followed, including LP, many people are misdiagnosed with MS when they actually have ME. Too many doctors rely too heavily on MRI and are unaware of other conditions, such as ME, which present with deep white matter lesions.

    MS, like ME and FM, is not easy to diagnose if it is relapsing and remitting or a mild form of the disease. Teasing these conditions apart on the basis of MRI alone can be impossible in cases where the lesions are non-specific in appearance.

    I was told I have MS by the first person who read my MRI. I don't. Treatment for MS, when I did not have it, would have made my situation more confusing and, probably, more dire.

    Treatment for MS has changed a lot in the past few years. More people with milder symptoms are being treated with stronger drugs to slow the progress of the disease. You really do not want to be treated with these drugs unless you are absolutely sure you have MS.

    I would not accept a diagnosis without positive MRI, EVP and lumbar puncture unless my symptoms were completely and unequivocally a form of actively progressive MS.

    Most of us go through a time of "maybe MS" following "maybe Lupus". There are a great many similarities. People have referred to ME as "MS light" - not to diminish ME but to distinguish it from some forms of MS which are quickly catastrophic.

    I hope this is helpful and not anxiety inducing. "Maybe MS" is an uncomfortable place to be. Many of us have been there.


    ETA Just reread Kellygirl's post. She's so right about the confusion and the HHV6. I also have active HHV6 which is found in both MS and ME.

    ME and FM are so bewildering.

    [This Message was Edited on 07/20/2008]