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Old Fri Aug 17, 2012, 04:58 PM
dfantle dfantle is offline
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Join Date: Jan 2012
Location: bellevue, wa
Posts: 150
Hi Fried, I think what we may be trying to help you with is encouraging you to see the right specialist to help you assess what may be happening as your symptoms are so varied.

In my experience the conclusive way to know if there is a bone marrow issue going on is to have a bone marrow biopsy. I have had many over the years and truly the aren't as scary as they sound. You can even request conscious sedation for them which I've now decided is my preference. You may be a little sore after but I've often dined out with my family or friends just a few hours after with no issues.

Some on this site have had to see a few different docs over the years before a conclusive diagnosis. Some internist's or general practitioners either have had experience with or have been trained to pick up subtlties of different autoimmune diseases while others have not which is why we're suggesting you see a highly trained Hemotologist in a large city where they treat a lot of patients.

I know of a number of people in my community who have been misdiagnosed numerous times by internists and even organ specialists (heart, liver, kidney, GI...) before finally seeing a very experienced Hemotologist who diagnosed autoimmune issues or blood disorders as the cause. This then means the condition can be properly treated-either by diet or medications.

We're only suggesting you share the nearest large city so we can offer suggestions of who might be good to see, if you'd like to do this.

Best

(excuse typos, sent from
Mobile phone)
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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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