confusion - need advice

[Guest guest]

Jen,

Oh how I can relate. First of all, use your wheelchair if and when

YOU feel you need it. And why is a Dr. of Physical Therapy trying

to 'rediagnose " you?

Like you, I have leg reflexes, although for years had none. I don't

even have drop foot and have very strong calve muscles. No hand

involvement. Last neuro I saw examined me and just murmured " hmmmm "

he was floored when I told him I was diagnosed with CMT when I was

10. He said " and this is all your symtoms " (I did add my tremors in

there)

I'd had a lifetime of docs, PTs, etc., all trying to figure out what

I " have " . Interestingly enough my last EMG/NCV in 1998 or 9 indicated

all normal readings with reinnervation, which indicated Type 2. Of

course no one has ever told me I have Type 2 and I have not had the

genetic test.

Donna in London once said something that has struck a chord with me --

something about docs like to further their own medical education on

patients over and over, using new equipment, tests, computers, etc.

I have been diagnosed and rediagnosed (even after a normal

muscle/nerve biopsy) with MS, MD, FA, 's and RA. After the

years went on, I just gave up on those diagnoses, and once I had

that 1999 EMG/NCV, and had studied enough on CMT, I have concluded I

have it.

Many docs and PTs still use medical books and case studies in them to

insist we can't have 'this or that' but can have 'this' because the

book says so.

Just think about all the research on CMT that has passed through 7

years of . It has expanded so much, so much has been learned,

and we are on the advent of seeing actual 'therapies' evolve.

If I could give you advice, like I said, use your chair, wear your

AFOs, do what makes YOU feel comfortable so you can best manage your

health. If the PTs and OTs can offer help and suggestions, try out

what they have to offer. Question the PT who says you don't have CMT -

maybe send her/him the new CMT/HSMN booklet from HNF-cure.org

There is so much that bonafide CMT researchers don't know, and they

study CMT day in and day out.

If you feel that you want the genetic testing, get it, or if you

don't want it, forget it. Look at the results of your last EMG/NCV

and see what that says. That test is still a very good indicator of

CMT. You may wish to be tested for some other syndromes, like I was.

At any rate, don't let this get you down. You are a very strong

person and I know you won't stand for any cr**. I am from a

generation that was taught to " question authority " and I still do it.

So, get in there and question it too!

Hope you had a wonderful Easter with the boys and all.

~ Gretchen

~ Gretchen