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Old 08-17-2009, 01:21 PM
AintSoBad AintSoBad is offline
In Remembrance
 
Join Date: Mar 2009
Location: Eastern PA.
Posts: 1,143
15 yr Member
AintSoBad AintSoBad is offline
In Remembrance
 
Join Date: Mar 2009
Location: Eastern PA.
Posts: 1,143
15 yr Member
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Quote:
Originally Posted by CZZ74 View Post
Hi I wanted to share this incase it helps someone else and saves you some time. I am in years 6 of my rsd, full body have had every treatment in the world literally including coma in Germany. Last year I began having seizures. Terrible ones. they mimic petite grand mal. The brain shudders are terrible and painful. The seizures continue, I am conscious through them , they most happen at night and in am just as I am waking. I have had one during day. I wrote dr. Schwartzman he said they are not seizures in the traditional fashion it is the rsd corrupting my central nervous system causing these events. If I could find the email i would quote him exactly. They have become so frequent and severe that over the past 6 months i have managed to get all the way from Cat scan of the brain- results nothing- to mri of the brain- nothing to the ulitmate test MRA of the brain with contrast- results perfectly normal. So Dr. Schwartzman was right. I was sure he was wrong and i had developed epildepsy from the coma- alot went wrong. I thought this might be helpful to anyone else suffering these seizures and brain shudders. It is alwasy the rsd. very depressing in a way as nothing can be done. Please post if you have these too and what meds you are taking and if it is working thank you cz

Thanks for writing this!
I'm going to see Dr Knobler, (Dr Schwartzmann's ex parter, from Jefferson) this Wednesday. And, I'm having such difficulty, trying to describe what's going on with me!
I need him to write a letter (his wife called me a few weeks ago, about some other business, and she caught me during a crying spell. She immediately took the reigns, and wanted to do whatever could be done, so they're going to write a letter to me, to or for, the court. (divorce issues). Anyway, I was supposed to fax or email her something, and I'm just stuck!
I can't come up with the words, to describe what's going on with me!
(Understand, I have RSd, Tos, Tbi, etc.) so the tbi gets in the way of the pain , and v,v.
I probably have six or so letters started on this computer. As soon,
as I try to 'think", I get confused. "Flooding" is horrendous, if any of you know what that means to a tbi person, it's like a computer with not enough RAM. The little clock will spin, until it crashes the computer....
It drives me NUTSO!
I can't even go into it all here, or, I'll wreck my afternoon.
But, I DO know of what you speak!
Dr S. is Correct! I do believe.
Now, I add a TBI to to RSD, and what gives???
AGH!

Best Wishes for being well!

Pete
asb
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"Thanks for this!" says:
CZZ74 (08-17-2009), Dew58 (08-17-2009), fmichael (08-19-2009), loretta (08-17-2009)