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Thread: For those men still seeking a diagnosis for adult-onset neuro-muscular disease

  1. #1
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    For those men still seeking a diagnosis for adult-onset neuro-muscular disease

    For those men still undiagnosed or questioning a diagnosis, I've posted the following description of Kennedy's Disease taken from the www.kennedysdisease.org website. Further information, including case histories posted by many men diagnosed with the disease and a list of labs able to perform the genetic test to diagnose Kennedy's, is available on the website.


    "Kennedy's Disease can be easily diagnosed with a simple DNA blood test. It is estimated that 1 in 40,000 individuals worldwide have Kennedy's Disease. However, many go misdiagnosed or not diagnosed for years. The number one misdiagnosis is Lou Gehrig's Disease (ALS).

    Kennedy's Disease (also known as Spinal Bulbar Muscular Atrophy, SBMA, or Kennedy's Syndrome) is a rare and currently incurable and non-treatable X-linked recessive genetic progressive neuro-muscular disease. Both the spinal and bulbar neurons are affected causing muscle weakness and wasting (atrophy) throughout the body which is most noticeable in the extremities (legs/arms), it is especially noticeable in the face and throat, and causes speech and swallowing difficulties, major muscle cramps as well as other symptoms
    .

    KD is an adult-onset disease with symptoms usually appearing between the ages of 30 and 50. However, earlier onsets have been recorded.

    Generally males with this inherited gene develop symptoms, while females with this gene are usually just carriers. Although, in rare cases, females have been known to exhibit symptoms as well. Life expectancy is noted to be at or almost normal."


    I'm no expert, but being a carrier of this x-linked genetic disorder, and having several family members affected, I've learned a fair amount about Kennedy's disease and will do my best to help anyone with aditional questions. Feel free to reply to this post or PM me.

  2. #2
    Super Moderator Sue Pendleton's Avatar
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    Thanks Special Mom.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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