Kennedys Disease Community
help finding dr

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06-01-2007, 08:54 AM
help finding dr
I have been diagnosed with "carring"the gean of kd.father is positive ad is in middle stages of kd.I seem to be finding myself running in some of the same patterns that my father is.I live in pgh pa and can't go out of state to find kd speciality Doctor.I was told about a blood number count that can tell me if and how seviere it may affect me.I can't remember the name of this test and I can't find a neologist who is willing to do the test.I have children and I feel this needs to be proformed cause of my declining health.can any one help me find a dr who is willing to proform this test?thank you.if anyone does please contact me at
06-04-2007, 02:15 PM
Bob Heitzman
I'm sure others will chime in here so stay tuned...

Just personal opinion here:

I don't believe it is normal for women to express significant symptoms if only one parent had SBMA. You may have something else going on.

My personal suggestion as far as testing kids (even a fetus) is don't do it until significant SBMA symptoms are present. Once treatments/cures become available this advice would be moot. But until then all you will do is foul up your ability to get insurance.

email:rheitzman at gmail