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Old Wed Nov 16, 2011, 02:00 PM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
Your symptoms from IVIG sound pretty awful but on the scale of possible side effects they are actually on the less-dangerous side. If you absolutely had to have IVIG again, they might control the side effects symptomatically and perhaps forestall them with a slow-paced infusion. However, if you need surgery in the future they may have better choices to offer you than they did 5 years ago.

I should mention that I'm a caregiver for my wife, not someone with medical training, so I'm not speaking with authority. Instead I'm telling you what I know from what I read and from our own experience with IVIG.

Your general practitioner should certainly know your full medical history, and I think that you should have a hematologist you see routinely too because of your AVWS. However, unless routine tests or symptoms show that you might have an ongoing blood or marrow problem other than AVWS they may not see the need for a bone marrow biopsy or other non-routine tests.
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