diagnosis/alcohol/foot surgery

January 22, 2000

I am just responding to a couple of posts. I have not had the DNA test

for diagnosis, as the test wasn't invented with I had the original CMT

diagnosis (1963 or so) At this point in my life, I have no need to get

the DNA test, either for diagnosis or genetics. I do not have any

children, nor do I plan on having any (just my choice, here). My latest

EMG last summer indicated CMT again. That's enough for me. I was

re-diagnosed

on through my teen years and in my 20's with just about every

neurological disease possible. I have had extremely thorough testing for

all kinds of neurological diseases.

Marc, thank you so much for your kind compliments. I started this

community at onelist because I believe in being positive - even with

CMT. Also, to connect others with CMT. Websites full of information are

fine, and thank you Kat, for positing Dorothy's site again. Information

helps us all and is especially beneficial for those recently diagnosed.

Because it appears CMT is so varied in signs, symptoms and stages among

us, I also started this list so that CMT persons could exchange methods

of coping (in a positive way). What I have not found in all my CMT days

is information that can tell me about coping. I just had to live my

life, sometimes 5 minutes at a time and do the best I could with CMT. I

let nothing hold me back, except now and then a bad attitude! Learning

from each other about coping is what CMTUS is all about. Like the posts

earlier this week on cooking.

And something I forgot to put in about alcohol - too much alcohol

depletes one's potassium levels. Potassium helps fuel muscles.

OK, now, Lori, about the foot surgery, any kind of surgery for CMT

persons CAN take a longer time to recover from. Just because our bodies

work differently. I did see an orthopedic doctor about 10 years ago who

wanted to " fix " foot pain with surgery. All I remember is he said he

would break the bones, put in pins, etc. Then he said I would need to

have it done again in another 10 or so years because it doesn't last

long! I DID NOT have surgery then, had some kenalog injections, did some

resting, and sometime later got orthotics to wear in my shoes. In no

time I was walking the dog again. If I were thinking about foot surgery

now, I would get a handful of opinions and I would also dialog with

these doctors about CMT and surgery. You might want to check into some

previous newsletter articles from http://www.cmtint.org too.

Gretchen

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