Charcot Marie (peripheral neuropathy)instead of CFS/FM?

Discussion in 'Fibromyalgia Main Forum' started by melody5, Jul 25, 2006.

  1. melody5

    melody5 New Member

    After 12 1/2 years of CFS/FM and many doctors treating me for that, I went
    to a neurologist, who said I had idiopathic genetic degenerative periperal
    neuropathy, specifically, Charcot-Marie-Tooth disease (doctor's name,not dental). The symptoms are much the same. The neurologist said she was
    positive. Net research says it takes an average of 11 1/2 years to get a
    diagnosis for that disease. Neurologist, associated with Stanford, also said
    she know nothing about CFS. Anyone else get late diagnosis of CMT?
    What do you think? Can both exist together (CMT and CFS) or perhaps an original viral infection activates the gene?
  2. tansy

    tansy New Member

    but I know someone in the UK who has both. He found exercise helped with the CMT until he had ME (he does not use the term CFS). He sees them as seperate issues. His mother had CMT and she experienced fatigue as against the problems defined in the diagnostic criteria for ME (Ramsay, Canadian).

    TC, Tansy
    [This Message was Edited on 07/25/2006]
  3. pam_d

    pam_d New Member

    I've never heard of your specific type of peripheral neuropathy disease, but I'm wondering what they suggested as a treatment?

    I just wanted to share that my husband, who has peripheral neuropathy but the kind you get from diabetes, has had miraculous results (after being in 24/7 pain for several years) from the drug Effexor.

    For a year or two, his doctor had been trying to get him to consider this anti-depressant which has been shown to help with neuropathic pain, but my husband was reluctant (side effects, etc.). Finally he got so tired of the continual burning, tingling and pain (and pressure from me!) that he tried it.

    Literally within the first 24 hours, he was at least 90% improved (although the doctor said give it a week to work). He just is kicking himself that he didn't try it sooner! But he feels great, and has resumed walking, hiking---he had had to give up these activities, and they are things he loves & are good for diabetics especially to do for exercise.

    Cymbalta, I believe, is also targeted toward peripheral neuropathy (not all ADs are), and again, I couldn't say for sure that'd it would help your specific type of neuropathic pain----but I just wanted to mention what a huge difference it made for my husband in case it was something you might want to ask your doctor about.

    Hope you feel better!

    Hugs,
    Pam
  4. annahd

    annahd New Member

    I've had fibro and Raynaud's for many years. The soles of my feet have burned off and on for years and for the past five or so years, my knees and legs (from the knee down) have been stiff. I have a panic disorder, cancer phobia and scared to death of illnesses. For me, it only gets worse with age unfortunately. My internist is sending me for nerve conduction tests and blood work. I think she feels I have neuropathy. She didn't say but I'm sure that's the reason for the neuro. At my advanced age, I'm sure the blood work is to check sed rate for arthritis.

    I read somewhere that fibro can cause the feet to burn. Do you know if this is true?

    Melody, would you describe your symptoms please? I've heard bit about CMT but don't know much about it.

    Thank you for taking time to read this. I pray you all will be blessed with peace and comfort. annahd
  5. lenasvn

    lenasvn New Member

    Do you have weakness in your ankles and weak small muscles in the foot (causing foot drop when walking)? I am absolutely sure both can both exist together. If you have a CFS or FM diagnosis, this new diagnosis will not make a difference.

    [This Message was Edited on 07/25/2006]
  6. annahd

    annahd New Member

    My ankles are normal. I have FM. I think I have osteoarthritis also. My knees are sometimes painful and are stiff all the time as are my ankles. The ball of my feet hurt. I'm being zapped and zinged all over since I've a panic disorder and the fibro is really acting up, even on my scalp. I love my doctor but she scares me sometimes. Of course she only wants to help me I'm sure.

    Thank you for writing. Blessings, annahd