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From:
Shelly Moore <[log in to unmask]>
Reply To:
Shelly Moore <[log in to unmask]>
Date:
Sun, 20 Jul 2003 21:11:38 -0700
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<<Disclaimer: Verify this information before applying it to your situation.>>

My younger sister (37) has been very ill the last couple of weeks, and the doctors have been puzzled trying to diagnose it. She wound up in the hospital after having a grand mal seizure outside a restaurant. When she was taken to the hospital they found her calcium and red blood count dangerously low, almost non-existent. She has been having problems for years with intestinal disturbances, hormone and female issues, and also was previously diagnosed as RSDS (Reflex Sympathetic Dystrophy Syndrome). She started having seizures as a child after a blow to the head but this was her first one in a very long time. They are doing an MRI and EKG's as they also think she might have had a mild stroke, but we do not have the results. 

I was doing some research and put hypocalcemia [low calcium], anemia, and seizures together, and guess what one of the search results were? Celiac Sprue! {The article it referred me to was at http://www.emedicine.com/MED/topic308.htm} It is a long shot but it may be the answer were are looking for.

The problem we have now is that according to my sister there are not many good doctors in Las Vegas, and her insurance sucks. She can probably get her GP to order the test or get a referral to a local specialist, but we would really like to know if any one on the list has any suggestions of who she can go to? Personally I'd rather see her go to Stanford or even come to OHSU but out of town travel is not an option.

Also what is the name of the blood tests they should start with?

Please reply off list as soon as possible. She will be seeing her doctor very soon.

Shelly Moore
President - Oregon Chapter National Marfan Foundation
(Self & all 3 kids tentatively diagnosed Stickler's syndrome affected, daughter 18 - celiac, son & daughter 17 & 16, possible celiac affected, husband Marfan syndrome affected)

Have-A-Heart for Marfan's!
Learn More about Marfan's Syndrome at http://www.marfan.org
Also visit the Oregon web site at http://oregonchapternmf.homestead.com

Stick together to help those with Stickler's Syndrome!
Visit the Stickler Involved People's site at http://www.sticklers.org/sip/
Reaching out to those with Stickler's in Oregon at http://oregonsticklers.homestead.com

* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *

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