No diagnosis, just family history and symptoms

[Guest guest]

I have not been diagnosed with CMT. I feel certain that this

will be the end result of what has been a lifetime of being

diagnosed with a variety of things that fit most of the picture

but never all of it.

When I came across CMT as a note in a record from a neurologist.

I looked it up. It fits too perfectly. The neurologist stated

that he didn't feel it was CMT. He based this on the fact that

the only visible symptom was high arches. He never asked me any

questions, looked only for the diagnosis of MS that my family

doctor felt was probably a possibility.

I had an aunt that was at the severe end of what I have been

reading. She was wheelchair bound for 12 years. She was never

diagnosed. A doctor called it possibly a mild case of MS

because he needed a diagosis to put on the paper work for the

nursing home.

I know most of you probabily have discussed this topic to death

but could you help me by telling me if this is often the case

before a diagnosis is made or were most of you diagnosed easily

right away?

I have called Mass General Hospital to try to get an appointment

with someone in Neuromuscular Dept. I am guessing this is the

correct first step. If not, please let me know.

Thanks, Swimmer