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

July 17, 2004

Hi Roy

I can certainly understand you feeling terrible with no dx after 5

years. I feel the same after 7 yrs. Its very frustrating!! My neuro

tells me that usually all patients without a dx are dxed after 15

years. so i only got 8 more years to go. Now aint that something!!

but keep your chin up and remember the old saying " no news is good news " .

Maureen

-- In PLS-FRIENDS , Roy <logans@a...> wrote:

> 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 <mazzie20022000@y...> 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

>

Recommended Posts