Re: Digest Number 2588

[Guest guest]

In a message dated 7/10/2004 11:24:35 PM Eastern Daylight Time,

PLS-FRIENDS writes:

> 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.

Hi Roy,

I need to clarify something. There are only a few of the two dozen (probably

more) HSP genes and only three can be commercially tested for. Laboratories

that are studying a few other exceedingly rare forms of HSP can test for those

genes, although that doesn't mean they release results to the patient.

A " negative " result of a commerical gene test or a gene test done through a

laboratory test does not eliminate HSP. It just eliminates HSP caused by one

of those particular genes. I undoubtedly have HSP, however, I did not test

positive for any of the known eleven HSP genes that could be the culprit. There

are more than a dozen other HSP genes, and I have one of those.

Please understand I am not suggesting you have HSP. I am not a physician. I

am only clarifying this issue as it can be confusing.

Neurologists can only go by the symptoms they see, the tests they take to

eliminate other causes, the gene tests that can be taken, and examining family

history. Reserachers on HSP indicate some 30% of people with all the signs and

symptoms of HSP do not show a family history. In those cases, they just have

to continue to observe and test.

It can take years for full symptom expression. You are not alone in the gray

zone. Often, but not always, the answer comes over time.

If you'd like more information on HSP genes, there is an article on HSP and

Heredity here:

http://sp-foundation.org/hsp-heredity.htm

Best,

Kathi