Re: Markw732 I need your help

[Guest guest]

Mark, once again I've been " shut out " of mail from PLS-Friends in my AOL server.

You helped once before. Please, please could you help me again.....Connie

markw732 wrote: Maureen,

I had symptoms that were serious enough to see a physician back in

about 1996. The symptoms were hip pain, lack of balance on my feet

and minor leg weakness. I was diagnosed with PLS in 1998.

My diagnosis remains a " working diagnosis " . This means that if

symptoms change, so will my diagnosis. Nonetheless, after 6 years

of the same (but progressively worse) symptoms, it is very unlikely

that any new symptoms will arise in my case--according to my

neurologist.

Typically, but not always, PLS includes speech problems. Some

neurologists insist that there must be speech problems to have a PLS

diagnosis. Others disagree.

In a year or 2, new diagnostic criteria for PLS will be published.

(Thanks to Thomson, Gentner, Thurza and

Dixson who worked for 2 years to help organize the PLS

Conference help early this past June in Santa Cruz, CA.) Once the

new criteria are published, neurologists will be able to classify my

symptoms more accurately. And there won't be any more disagreements

about whether speech problems are required for a final PLS diagnosis.

Until then, I wait for the final word on my diagnosis.

Mark

> 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