Celeste update!!

[Guest guest]

So sorry I haven't given any update on Celeste lately. She got out

of the hospital last weekend and on Monday believe it or not we flew

her to Bethseda land to take place in Dr. Goldstein's autonomic

study. So here is what the results are. Dr. Goldstein ruled out

Parkinson's disease and Pure Autonomic Failure. On the MSA front he

said his best guess was that she had MSA but that there were things

that pointed to it not being MSA. So I guess we are still in search

of the enemy.

So here is my question now. Do any of you diagnosed with MSA have

what you would describe as seizures. In other words, you sort of

seize up and can't move and your eye's flutter and it lasts for

varying times but it comes on in a wave and then just leaves after a

few minutes or hours, it just depends?

I am really beginning to think there is something going on with

Celeste that nobody has gotten to the bottom of yet. Her pain is so

much more severe than others for the most part describe and her

symptoms don't match up real well.

Thanks,

Dawn Morley