my neuronal CMT type

[Guest guest]

I also haven't been given a number or what type I have. I have been told I have

RSD and CMT, that was good enough for me. I have what we call bad spells when

my legs come out of these. The bad spells are a little bit worse off than

before, but I have learned to live with it. I don't let it stop me, I do

woodwork in the garage, crochet, quilt and show at our local craft fairs.

There is a lot of quality time even if you have CMT. With help from my family

I live a pretty normal live style.

Stout

[Guest guest]

Dear Kdelson,

I do not know my 'type', numerically or alphabetically speaking. When I

was first diagnosed, then subsequently diagnosed we didn't have the

classification of types like today. I have had 3 EMG tests in my life;

(I was a teen for the first two and haven't a clue what the results are.

The first one was never completed.

Now the most recent EMG/NCV I had in 1999 (adult baseline) the EMG

Doctor/Neurologist noted all my conductions are in the 'normal' range,

with some reinnervation; he suggested at that time that I have a

neuronal form of CMT. At one time I posted the entire results of my

testing and it is somewhere in our archives. Maybe you can find it. If

not, I would be happy to share the entire results of that EMG with you;

if you like, please email me directly. I have not had DNA CMT testing.

~Gretchen

[Guest guest]

Thanks Gretchen for responding to my question. I have had two EMGs, five

years apart and both suggested a peripheral neuropathy, most likely some form

of CMT or spinal muscular atrophy. I read about SMA and I don't think that

sounds like what I am experiencing. Ironically, after the first EMG, I was

diagnosed with MS (about nine months after). So for four years I thought I

had MS, took daily injections, trying to convince my neuro that I thought I

had CMT. He said I probably did but since there were no medicines for CMT or

cure, continue treating for MS and just consider myself extremely unlucky to

have been given two diseases.

To make a long story short, after having a brain MRI last year, my one

previous lesion had disappeared, thus MS was ruled out. I was ecstatic but

also very upset with my neuro. Needless to say, I never went back to see him.

No one in my family has CMT. I have very distinctive high arches, a left

footdrop, and in general, a very weak left foot. I can't wear any type of

heel at all. I can certainly live with this but was thinking about having

the blood test once and for all, hoping that I can definitely know if I have

CMT. Why? I have been incorrectly dxed once already. I paid a terrific

price having accepted the dx of MS. I shudder to think how many others might

have gone through this.

Thanks again for your help. If you don't mind me asking, what are your chief

symptoms?

Karon