My Introduction

[Guest guest]

Hi, my name is Ray. I was recently dxd with cmt2 (another neuro dxd idiopathic

peripheral neuropathy) although I do not know if there is a history in my

family. I suspect my mom has it, but she is in her late 70's and has many other

problems including diabetes. What I have could also be a point mutation and it

could also be a wrong dx.

I originally went to my first neuro about 6 months ago for tremors. I thought I

had Parkinsons. After my lower emg, it was found that I had extremely low

amplitudes, near normal velocities, absent surals, trace/absent reflexes below

the knees and ataxia. I also have numbness in thighs, legs and feet as well as

pes cavus, feelings of ice cold/burning, pins & needles and itchiness (and I'm

sure I'm leaving out some things). I always thought that it was the aging

process and a lack of exercise. Since then, I have been poked, prodded, zapped

and stuck while trying to maintain my dignity. I had brain and spine mri's,

evoked potentials, countless blood tests, tremor analysis, Athena, etc. I also

have early-onset glaucoma that was dxd in my late 20's (I'm now 38). After 4

neuros, cmt2 was dxd and now they are going to start looking at my possible

sleep apnea.

At this point, I just want to get on with my life. I know there is a 50% chance

of my children getting it, but if they can't find it in me, they won't find it

in them (even then I can't do anything to stop it). I wan't them to enjoy life

and I want to enjoy them.

So even if it turns out that it's ipn and not cmt2, it's still progressive and

unstoppable. So what's in a name? I just for some reason can't seem to get the

closure I need at this point.

Well, that's my story and I'm sticking to it. Thanks.

Ray