Well, it looks like I don't have CMT

[Guest guest]

,

I don't have CMT either, even though that was my original diagnosis

10 years ago.

My primary neurologist after having me for a patient for 5 years, began to see

progression that wasn't consistent with that diagnosis.

He referred me to Mayo Clinic to the CMT " guru " who, after a 20 minute exam,

knew I didn't have CMT.

In his quest to get to the bottom of my illness and after 6 days of grueling

tests, blood work, and finally a nerve and a muscle

biopsy, a diagnosis of Distal Predominant Motor Neuronopathy (a motor neuron

disease) was made.

It is a close cousin to Lou Gherig's Disease, but not fatal. I wear AFOs, walk

with a cane or a rolling walker and sometimes need a wheelchair. I am 48 years

old and of normal weight. My worst

symptoms are the extreme weakness in my hands and in my legs below the knees.

My balance is awful. Overall, I am very healthy and am managing my

illness. I have been on disability for 5 years. I like to be a part of this

forum because of the commonalities that I share with so many, even with others

here who do not have CMT. I wish you the best with your quest to find the

truth.