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

[Guest guest]

Maureen:

I have had problems since June 99 brought on by a accident and the neurological

problems keep getting worse. A gene test [$3,000] ruled out HSP. I've had a

spinal tap,mris, emgs,all kinds of blood tests, all kinds of specialists, 4

neros, was dxed at the U of Chicago with PLS

now they are not sure. I'ts been over five years and no real dx, just possible

PLS and I feel terrible. Thats my story in a nut shell.

Roy

Maureen wrote:

Hi all

I have stated that i have either HSP or PLS but i have been incorrect

in saying that. 3 neurologists have only given me a diagnosis of

Spastic Paraplegia with Startle Myoclonus which as i understand it, is

not a diagnosis but symptoms of a disorder. The 4th neuro came up

with HSP or PLS but he is stumped with me as i dont clearly fit in

with either one. but he has said that it is more likely HSP as there

are 23 different varieties. My symptoms began 9 years ago and saw my

first neuro 7 years ago (who like Lana here, told me to see a

physchiatrist). You would think that i would have a diagnosis by now.

I am using a walker now outside the home and speech problems began

1.5 years ago but have been corrected by taking baclofen. So my

question to the people here is, how long after symptoms began did you

receive a firm diagnosis? and are there any people here, like me, who

are still waiting to be diagnosed?

thanks

maureen