Re: confusion - need advice

[Guest guest]

Wow Gretchen you have a great memory. You remembered that I have the 4 boys

now. Thanks for the encouragement. This isnt the first doctor to tell me he

didn't think I had it because of the reflexes and my calves. I wish doctors

knew more. It is so frustrating when they say that I have something else but

aren't sure what.

This may sound strange but I am used to CMT and would feel really strange if it

was something else. My last EMG was over 5 years ago

and showed that is was a " little " slow. Not slow enough to be considered CMT.

I had one before that that must have showed CMT because the doctor was very

depressing and told me to " Plan out my life " and " get on disability " .

Well I am stubborn and became a teacher and taught for 3 1/2 years. I figured

if I could just touch one life, the my job was done. I still have my students

call and write to me. If I would have listened to that doctor, I would never

have been able to touch them. So I will let what this doctor say go in one ear

and out the other like all the others.

Jen

[Guest guest]

Thanks Gretchen !

I know it wasn't meant for me, but you just said everything I needed to hear.

My $4000.00 Genetic Test came up negative for CMT, but my Dr. says they still

can't test for all CMT variations. He still says my diagnosis is CMT. I have

to say that if I knew that the test was limited in what it could positively

diagnose I would not have let him do it. But when he took my blood my I still

really did not know anything about CMT. My elders did not have it to the degree

that I do, and were told or thought that this happened when you got old, so no

diagnosis for them was ever made. Eventhough they had " bad feet and hands " .

[Guest guest]

My Neurologist tested me for CMT (Type 1) in the Fall " 89 and three

years was diagnosed with the severity Type 2 EMI Electronic Magnetic (testing)

My neurologist tested for nerve signals and sensations, in my case my lower leg

extremities ~ below the calf above the ankle result in cold, extreme numb

results and plain weak nerves.