CMT parent diagnosis

[Guest guest]

Debbie,

I can understand your confusion. As for me, I grew up around many

aunts, uncles, cousins, older generations, and have lived long enough

to see new generations born and grow up. I have seen many feet,

hands, watched 'the family' walk, interviewed older relatives to

obtain oral medical histories, and when I was in school in Zurich, I

had some free time to meet other 'family' and interview them about

ancestors, as well as observe young generations. The only 'medical'

items that surfaced after all this was 1)one incident of Down's

syndrome in a four year old relative, who subsequently died about

1920 from pneumonia and 2) an oral report of a great aunt who had

arthritis (she was 102 at the time I spoke with her and lived to be

107!)

As for your question " should I be satisfied " ? If your doc thinks the

boys do not have CMT, I'd suggest looking into other tests, like a

muscle/nerve biopsy, spinal tap, and whatever else is needed. No, I

don't feel you should be satisfied...have some other tests done, see

what those results are. Many neuromuscular disorders can outwardly

share some of the same symptoms, weak legs, drop feet, fatigue, etc.

Even after these tests, you may also want to get a second opinion

from another doctor.

~ Gretchen

[Guest guest]

Debbie,

I would get them both DNA tested if it was me. I was unfortunately only able to

test my Mom as my Dad had already passed on and my other brothers and sisters do

not want to be tested as they feel " they do not have it " . Anyways if I had the

chance for both to get tested I would have as of right now I am a mutation as

well.