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

[Guest guest]

Hi Ronnie

I agree with you that i dont know where i would be without the

internet and people to talk to about our rare disorders. I was lucky

that when my symptoms became significant, we had just subscribed to

the internet and i found a wealth of information, that neuros couldnt

give me and solace from people who had the same problems as me.

It sounds like there is a problem with where you live since there is a

large concentration of people with rare disorders. Brokovich

should be on the case!! but seriously it should be looked into.

maureen

> 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.

>

> --

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

> We are the CroMagnon of the future

>

>

>