Galen/ Re: How long did it take for you to be diagnosed

[Guest guest]

Galen,

Maybe everyone seeking a diagnosis should go to University of VA. I first knew

something was wrong in March of 1989. I just didn't think it was anything.

Then I started a new job in July of '89 and my insurance didn't kick in until

December. I wanted to wait for that so, finally, in Feb of 1990, I went to the

doctor for the first time for this problem, (dragging my foot, feeling tired,

heavy leg). Family doctor said there is something wrong, let's see a neuro.

Neuro said something's wrong but I don't know what, will you go to

Charlottesville? I said, very naively, I'll go anywhere to get this fixed. I

was at U of VA maybe an hour when they decided it was PLS. That was in April of

1990. And, like you, it has been re-confirmed at s Hopkins, town and

WVU. Guess I got it and guess it ain't gonna get fixed as quick as I thought

when I was young and uneducated but at least now I know it's noy going to kill

me. In 1990, before the computer, PLS Friends, and absolutely no information I

" knew " I was the only person in the world with this disease. I also " knew " I

was dying and no one would talk about it and worse than that no one even cared!

What a difference PLS Friends has made!

When I starting reading how long it took most folks to get a diagnosis I was so

thankful that I hadn't had to go through all of that. I still think it is

because of the concentration of neurological disorders in this area. I just

can't figure out why nothing is being done to see why this is so. I think there

is an awful concentration of PLS alone right here within 100 miles of me.

Berkeley Springs had 10 cases of ALS in about eight years or less. Way too many

from what I have learned. My dad has Parkinson's as do several others in town.

Multiple Sclerosis is rampant. I know two people here in town with HSP. There

are probably more. There are some other MND here, too, but I can't spell them

and don't have time to look them up.

Ronnie

Ronnie

Re: Re: How long did it take for you to be diagnosed

I got a diagnosis pretty quick. As a matter of fact, I may even hold the

record for being rapidly diagnosed with this stuff. I first saw a general

type doctor, who sent me to a neurologist, who did some tests (including

X-rays and MRI scans) and when he said he was puzzled, I got sent right to

the chairman of neurology at the University of Virginia School of Medicine.

He did some more tests and stuff, and then I got a diagnosis, which has

since been re-confirmed oodles of times. The whole process took less than

a year, unlike many of the stories you will hear. I must confess however,

that at the time I worked for that same medical school, and that the MRI

was almost just across the street from where I worked. Shoot, I could

leave work, have some scans or something done, and be back at my desk in

under an hour.

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Galen Hekhuis NpD, JFR, GWA ghekhuis@...

We are the CroMagnon of the future