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You can also consider getting a second or third opinion. We have gone to two places where they specialize in blood disorders and are back home. We had the records sent electronically to the two other places. In fact our doc knows other doctors so we went to the ones he knows. We got a letter saying what each doc thinks of the situation. It is very helpful to us and I viewed a video saying doctors talk to other doctors on topics that may help patients. Hope this helps.
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Caregiver for husband
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