Severe CMT?

[Guest guest]

Hello all,

I was just reading Gretchen's post about severe/early onset CMT

research. I was wondering " is there general concensus of what is

considered to be severe? " Until recently, I have never really

thought of myself as having a " severe " illness (hand problems

occurring in the last year or so and steadily worsening). But two

months ago, I had EMG and NCV tests at the MD Clinic and the

neurologist stated that I have lost approximately 80% of the strength

in my hands with the damage actually becoming worse the farther up my

arm (he said this is not usual). Sensitivity loss is 90+ % in my

hands. He said my condition would generally be considered severe.

But what I am wanting to know is if there is a generally accepted

idea of what is considered to be " severe? " The reason I am asking is

that at 33 years old with recent decline in abilities, I am very

concerned about what future effects will be. I know this is a

question with no " exact " answer, but I'd like to get a general idea.

-Rob

[Guest guest]

Rob: My understanding of " severe " is based on what medical professionals call

base line norms. If you have a medical issue(s) that deviate more than 60%

negative of the baseline norm, then that medical problem can be construed as

" severe " . It's all relative to the medical issue at hand. What you describe

would fall into the " severe " category. That's not to say you are no longer

functional as in the whole of you, just the areas described as being " severe " .

When the whole of you becomes so involved that you no longer function above 60

to 70% of the median norm, then the whole of you can be considered " severely

disabled " .

The State of Oregon actually issued a document to me that says, " Severely

Disabled " as the header. It's the document that was needed to define my

capabilities in relationship to vocational rehabilitation. At the time it was

issued, it was thought that I'd recover and " get better " as time went on. Of

course, that was some nearly 7 years before HNPP diagnosis for me. They don't

issue those certificates any longer as " severe " is relative to the individual.

Ergo, those who are physically but not mentally disabled can function in the

work force but still can be considered severely disabled. Again, it's all

relative to the scale doctors use to determine the degree of involvement our

body and mind is effected by any given medical issue.

I hope that is helpful. My comments are based on an explanation given to me in

1997 when I question the issuer of the certificate of disability who is a

clinical psychologist.

rQn I

[Guest guest]

Rob, that's funny that you should mention that because I, like you, didn't

consider myself to have a " severe " case of CMT, although many things are

extremely difficult. When I went to a neurologist for EMG tests they were

surpirsed at how well I can get around and how functional I am for my CMT " being

so severe " . They were surprised I was not wheelchair bound and were amazed that

I was still driving and working.

I'm also 33 and yes, it is scary to not know what the future holds for us. I

have changed my career plans numerous times to accomodate my CMT and am now down

to part time work and Social Security. I actually am doing a little better now

that I'm not pushing myself as hard every day.

Unfortunately no one can predict how CMT will progress and that's the horrible

part about all of this. I was told at age 12 I'd be in a wheelchair by age 20.

See how little they knew? I say keep active and most of all keep your spirits

up and don't let it get you down. :-)