My Introduction

[Guest guest]

Hello all:

I have just gotten my results from Athena and have CMT (MPZ unknown variant). I

do not know if it was inherited (I know nothing about my father's family and he

is deceased, my mother's side has no history of it) or if it is a spontaneous

mutation. Doesn't really matter to me, but my brother would like to know in

terms of his health (45 and no symptoms except sleep apnea) and his decisions

about having children.

It has been a long road getting here. I was originally diagnosed with CIDP

(2000) and treated with prednisone and then IVIG to no avail. Then received a

tethered spinal cord diagnosis. I had it surgically released three years ago,

and I have residual nerve damage because it was undiagnosed for so long (it is

usually diagnosed and repaired in childhood) -- sort of a double whammy in nerve

degeneration.

I'm 48, and work full time. I use a cane to walk any distance, or on uneven

ground. I cannot climb stairs without hauling myself up with the handrails. My

balance is awful, and my proprioception so poor that I have broken an ankle and

several toes in the last year from slamming into things and tripping. I have

RLS and am taking a Parkinson's drug, Mirapex, which is helping. That is the

only drug I currently take.

I am exercising -- both with weights and in the water -- helps me to feel that I

am fighting back and making myself stronger. My toes are curling up and under

so my next step is to visit a podiatrist and figure out how to take care of my

feet. I wear orthotics in my shoes -- my days as a high fashion shoe diva are

over (but I still drool unabashedly at shop windows). I am one of the lucky

ones -- I have very little pain -- mostly just tingling 24/7 which I compare to

having carbonized soda in my veins instead of blood.

I am grateful for this site and all the files and resources here. I feel less

alone and less crazy now because I see problems I experience written about here,

mobility, difficulty swallowing, hearing loss, fatigue, muscle cramping, bowel

motility, etc.

I'm having anger and frustration about how to " do my life. " It seems that all

my energy goes to work, daily living, housekeeping, etc. There is no time or

energy left for me. I am tired of being tired. I used to be a dancer and

choreographer -- I am still, after six years, dealing with grief and loss about

what my body can no longer do -- CMT gives new meaning to the phrase " the spirit

is willing but the flesh is weak " -- so now all my dancing occurs while sitting.

Reading the posts of others struggling with these issues is helpful, as are the

files on fatigue and stress. So, with your help I will just keep doing as much

as I can.

Sorry this was so long. Thanks for being here.

Tami

__________________________________________________