Myrtle Beach, SC doctor ?

[Guest guest]

Hi! I will tell you a little about myself and, at the same time, ask if anyone

can recommend a neurologist in the Myrtle Beach SC area who is familiar with

CMT.

About me - 60 years old. Father, three brothers and at least 3 nephews are

diagnosed with CMT. Degree of impairment varies greatly. All three of my

brothers are considered disabled by CMT and no longer work. One brother wears

leg braces on both legs (CMT has progressed above his knees) but gets around

fairly well in spite of that. He also has involvement in arms and hands.

Another has lost several toes and probably should wear braces, but does not,

he's never mentioned arm/hand involvment. The other brother has involvement in

both feet, has lost a few toes, but does not seem to need braces. His sons are

not so lucky, as one has had several amputations resulting in loss of foot and

lower leg. He frequently gets infections on the stump from the rubbing of the

prosthetic. As a result, he is in and out of work and very depressed.

Also he recently went through a bout of blood clots in the lungs, and am

wondering if that is in any way related to the CMT. His brother also has CMT,

and uses a brace for walking because he had an infection inside his foot that

went undetected until the foot 'burst' open - several foot bones were 'eaten' by

the infection.

My father also had amputation to the ankle, and wore prosthetic + brace on 1

leg, brace only on the other. I don't know if his arms and hands were involved,

but when I look at things he wrote, I see my own handwriting mirrored in his.

Now, about me. As I said, 60 years old. I have fibromyalgia which is mostly

under control through medication. About 10 years ago I was diagnosed with CMT

by one Neurologist; got a 2nd opinion from another Neurologist who deals with

CMT through an MDA clinic, and he said I don't have it. No CMT blood testing was

done, but I did go through EMGs, which did show neuropathy. I think the first

neurologist diagnosed based on family history.

In the last year my neurologic symptoms have advanced with what I think is

alarming speed. In the last 6 months, my left foot is showing signs of drop

foot, and there is more pain. I was laid off work as a system engineer, working

on the computer all day, in October. I was so relieved because the last 4

months on the job were sheer torture due to pain/tingling/fatigue in shoulders,

arms, elbows and hands.

I have sensory issues and fine motor skills are declining: can't feel small

things to pick them up, counting money is difficult, and I can only handwrite

for a few minutes without resting due to fatigue/pain in hand. I feel like I

have tendonitis in my elbows (have had cortizone injections with no lasting

relief)and cannot put pressure on the elbows without pain that lasts for several

hours. My forearms will start to hurt/burn after exertion.

Reading a book, one of my favorite past times, is unpleasant as holding the book

causes so much pain and fatigue in my arms. And this just breaks my heart - I

can't vacuum or scrub floors due to the pain!

I had 2 surgeries on my right shoulder; one removed a spur, the other fixed a

partial tear in a tendon. The first surgery was a blessing and relieved a lot of

pain. The second restored function to my arm, which was collapsing when I

reached overhead and picked something up. However, the right shoulder is always

sore after exertion and I can't sleep on my right side because of the pain. I

don't know if I can tie that to a neuropathy, though.

Recent discussion with the brother who wears the leg braces revealed that he has

similar problems in arms and hands and was advised by his DR to stop working (he

worked at the post office sorting mail, etc.) because the work was making it

worse.

Right now I am on unemployment, but I dread going back to work. I need to find a

neurologist in the Myrtle Beach SC area who is experienced with CMT so that I

can have a thorough evaluation of my symptoms. Can anyone help me?

Thanks!