Re: Celeste update!!

[Guest guest]

Dear Dawn: My husband Bob had seizure like activity before he had a

Pacemaker put in in l996. He has not had one since. I'm not sure it was a

true seizure but it sure looked like it. He had an aura before and sort of

knew it was coming. He would shake (not all the time) and fall over if

standing or if sitting just slump over. He always slept quite a bit

afterward.

Pat from Framingham MA

[Guest guest]

dawnmorleyus wrote:

>

> 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.

Please what 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.

What are the 'couple ' symptoms that are not typical of MSA?? Honestly,

I am beginning to wonder if their is a young onset MSA as their is with

the PD'ers ??? Any thghts??

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?

*****

Yes to the seizure TYPE activity. I have myoclonic/us seizures ,ect.

******

Sincerely,

nancy m.

> 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

>

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