My Introduction

[Guest guest]

Hello to all,

My name is Darrel Moon. I am 57, male, and I don't know if I am afflicted with

CMT or any other form of Hereditary Motor-Sensory Neuropathies.

I fell from a ladder at work in November of 1998, and have had back, shoulder

pain, and bouts of Sciatica pains posteriorly in my right buttocks and upper

right leg. X-rays and MRIs reveal six areas where I have disk damage, or bone

spur intrusion on the spinal nerve canal.

I have had one failed shoulder surgery, and I am reluctant to have any further

surgeries until I am certain what physical conditions I have.

In addition to the back and shoulder pain, I also have a numbness/tingling

sensation when I move my toes; at rest they have no abnormal sensations. I have

had selective transforaminal epidural injections at the L4-L5 level which

relieved the sensations in my toes for several weeks. This relief was thought

to be a positive indicator of spinal canal nerve compression by one orthopedic

surgeon.

In 1993 I had a nerve conduction test because my left pinkie, ring finger, and

palm where numb, and both hands would become numb at work, and overnight while

asleep. The bilateral nerve conduction test showed I had a pinched left ulnar

nerve at the elbow and wrist, as well as carpal tunnel syndrome in both wrists.

At that time, I underwent surgery for the ulnar and carpal nerve release on the

left elbow and wrist; I have yet to have the right carpal nerve release. The

1993 nerve conduction test made no mention of any other neuropathic conditions.

The carpal tunnel syndrome has returned to the left hand, although it is not as

severe as it was in 1993.

Since 1993 I have had three nerve conduction tests; two report a

" polyneuropathy " , and the last test resulted in a diagnosis of " Hereditary

Motor-Sensory Neuropathy Type II, or CMT " . Since my mother, aged 78, had recent

surgery for her " hammer toes " , and I have fairly high arches the doctor

concluded I had CMT before he conducted the nerve conduction test. I have been

doing some research on these disorders, and the doctor may well be correct in

his assessment, but the MRIs, X-rays, and the epidurals point to another

conclusion.

So you all can probably tell why I am here on this list; to get information on

how one can get definitive proof of having HMSN-2, or CMT. I can't rely on the

Worker's Comp. insurance to spend another dime to resolve the issue; they may

have to in the end, but I would like to get information on the subject ahead of

time, so I can competently deal with the medical issues and the insurance

company.

I have read there are DNA, blood, and biopsy tests that can be run which reveal

neuropathic conditions. Have any of you had these tests? If so where did you

get them, what did they consist of, what was the cost, and did your medical

insurance pay for the tests?

Thank you all for any assistance you may provide,

Darrel Moon