New to this group... , Vera and All

August 17, 2002

,

We know of people in Oregon, who have a support group which meets at least

sometimes still as far as I know. There are seven members of the list in

Washington, BUT I do not know who they are at this time. Pam keeps a list but

is off in Scotland presently. I lost my list in a computer crash about a month

ago.

All,

If you are from Washington, please step up and write the list letting us know

who your doctor is and how they are. The best bet is usually a neurologist (or

cardiologist) who specializes in movement disorders or autonomic failure. Some

here have also had luck with neuro-opthamologists. Geriatric doctors (usually

associated with nursing homes) may also know about the disorders. Ask around

and even your family doctor may know of someone.

Vera,

Where did you get the list of doctors you sent the list? The first doctor is

listed as being at the Gamma knife center, which sounds to me like a

neurosurgeon. Did you use a Parkinson's list? MSA (or suspected MSA) patients

should be absolutely sure what they are facing before facing any surgery.

Deborah's unfortunate experience should show that. There is NO surgery for MSA

at this time. PD type surgery is risky at best for MSA patients.

For now, MSA patients have to cope and wait. I am sorry, but that is fact. I

hope many of you see a cure in your lifetime.

Take care, Bill Werre

lly

> > think my mother could use some help, or at least some informaion.

> > Thanks in advance!

>

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