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Old Thu Aug 16, 2012, 01:27 AM
dfantle dfantle is offline
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Join Date: Jan 2012
Location: bellevue, wa
Posts: 150
Wink

I agree with "Triumph" that a visit with a good hematologist at a center of excellence seems like a really good idea. If you respond with the nearest large city to you, folks on this site may be able to make a good recommendation for you.

After reading your symptoms, I wondered if your Dr has ever run the following blood tests: Freelite Chain, Creatinine, BNP and Troponen. Also have you had any bone marrow biopsies? Rare diseases are often very difficult to diagnose as they're are a number of diseases where the symptoms could lead Dr's in a number of different directions.

Best,
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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