cancer and scarcot marie tooth disease

sarahohio
sarahohio Member Posts: 9
edited March 2014 in Breast Cancer #1
I was diagnosed with breast cancer last year. I also have a nerve disease called scarcot marie tooth. Several of my chemos were listed as toxic to me, but tried anyway. Had allergic reactions especially to taxol. Has anyone else had same problem.

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  • inkblot
    inkblot Member Posts: 698 Member
    #2
    Hi sallyP:

    I think you're referring to Charcot-Marie-Tooth Disease?

    From what I've read, it's an hereditary disease/disorder, ranging from mild to more severe. Did you have it prior to chemo? Just wondering because many of us have some neuropathies following chemo, particularly with Taxol/Taxotere. These typically resolve over time.

    I had a some wrist problems which developed about 3 mos. post chemo. Dx'd as Stylo-teno-synovitis.
    Treated with various methods for about a year in an effort to avoid surgery. In my case, the nerve and the nerve sheath were inflamed from wrist to elbow. After surgery (ultimately went for it, as nothing else was helping) it cleared up completely with no problems since. The surgery was almost 2 years ago. Wasn't a very painful surgery and I healed quickly afterward. I now take a daily supplement of Glucosomine/Chrondroitin w/MSM. No complaints and it helps keep my joints/ligaments well lubricated.

    If you're newly dx'd and never had any symptoms of Charcot-Marie-Tooth, prior to chemo, I'm just wondering if it could be mistaken for chemo induced neuropathy? There are quite a number of tests which can rule out CMT, as well as correctly diagnose it, but it sounds as if you may have already had all those tests.

    Several good websites for info where you can find out more about it, if that may help at all:

    www.mdausa.org/
    www.charcot-maire-tooth.org
    www.ataxia.org

    Hope that may be of some benefit to you and best wishes.

    Love, light and laughter,
    Ink
  • sarahohio
    sarahohio Member Posts: 9
    #3
    inkblot said:

    Hi sallyP:

    I think you're referring to Charcot-Marie-Tooth Disease?

    From what I've read, it's an hereditary disease/disorder, ranging from mild to more severe. Did you have it prior to chemo? Just wondering because many of us have some neuropathies following chemo, particularly with Taxol/Taxotere. These typically resolve over time.

    I had a some wrist problems which developed about 3 mos. post chemo. Dx'd as Stylo-teno-synovitis.
    Treated with various methods for about a year in an effort to avoid surgery. In my case, the nerve and the nerve sheath were inflamed from wrist to elbow. After surgery (ultimately went for it, as nothing else was helping) it cleared up completely with no problems since. The surgery was almost 2 years ago. Wasn't a very painful surgery and I healed quickly afterward. I now take a daily supplement of Glucosomine/Chrondroitin w/MSM. No complaints and it helps keep my joints/ligaments well lubricated.

    If you're newly dx'd and never had any symptoms of Charcot-Marie-Tooth, prior to chemo, I'm just wondering if it could be mistaken for chemo induced neuropathy? There are quite a number of tests which can rule out CMT, as well as correctly diagnose it, but it sounds as if you may have already had all those tests.

    Several good websites for info where you can find out more about it, if that may help at all:

    www.mdausa.org/
    www.charcot-maire-tooth.org
    www.ataxia.org

    Hope that may be of some benefit to you and best wishes.

    Love, light and laughter,
    Ink

    Yes that's it spelled it wrong. My family was dx'd with cmt years ago from grandpas side, Irish. I am having trouble finding Dr to help with pain etc. I hadn't heard others having pain too, don't feel quite so alone. Dr doesn't understand why still hurts after 9 months.thanks for the web sites Sally

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