Welcome Karrie

[Guest guest]

Hi Karrie,

I have read and re read your symptoms. I have no idea what you have either, LOL.

But its is nice to meet you and I hope you feel better soon.

[Guest guest]

Welcome to the group, Karrie. Just wondering if you've had the EMG/NCV

test and what those results are. It seems from there your neurologist

would order the CMT DNA test. Although that test can only test for the

44 or so 'subtypes' of CMT.

Meanwhile, perhaps you can ask your doctors for some pain relief help

from your nerve pain.

Again, welcome to . I hope you can get a sound diagnosis

of 'whatever' soon.

~ Gretchen (Founder/Moderator of )

[Guest guest]

Hello Karrie,

Some of the conditions you cite are there for me as well and not nearly so

extensive. I'm very sorry you are going through such misery. About 20% of the

known CMT types are amenable to a DNA identification. To check for them all

would probably run into several hundreds of dollars. They also require a fresh

sample of blood at a site such as Athena Diagnostics Labs in Worcester, MA.

Other facilities do that testing now.

I have been worked up at the Wayne State University CMT Clinic. Dr.

Shy there has a new technique which takes a small sample of skin from

the forefinger which could be frozen and shipped there for

examination. It is an experimental procedure now but he is looking for

validation with larger samplings. I have seen comment that much cheaper and

faster techniques for DNA evaluation are being developed in a Canadian site.

Maybe Gretchen or Maureen could comment on that possibility.

Best of luck in getting at the problem.

EdM from NH

[Guest guest]

Karrie,

I'm so sorry to hear such a horrible story, but I know how you feel. Before they

found me with CMT, I had so much electrical pains going through my feet, I cried

for nights not knowing what was going

on. I kept waiting to wake up (what little bit of sleep I got) in the morning

not being able to walk. I was given Neurontin and it helped for 2-3 months. Then

it got to be too much. So my diabetic specialist put me on Effexor. It worked.

I'm finding vitamin supplements help also....Vit. C, vit. E along with a good

diet plan. After they found me with CMT, I did a lot of research and realized

this was my problem.

When I found this group, I have felt a lot better about myself. Stay with the

group and you'll learn alot. Try to slow down in life. Life is too short to be

so miserable. Take Care.

Debbie