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Oct 08, 2009, 02:08 PM
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Member Since: Jun 2007
Location: Chicago, Illinois
Posts: 5,518
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Though it would be nice, I'm not expecting a solution to my problem. If my own doctors don't know the treatment and no one is currently involved in research, why should I expect any of you to come up with an answer. I'm just frustrated. 
I have a very rare form of hereditary systemic amyloidosis, of which there is no treatment or cure.
Recently I've been developing blood blisters on my hands. Sometimes they form after the slightest bump, sometimes they appear for no apparent reason at all. Over a month ago, I counted 25 on my right hand - eight of them refuse to go away.
The eight that remain have turned hard and black, with an expanded dark hue underneath the skin. They are very painful and it's not just a surface pain. I can feel it all the way into my bones. 
The only recommended treatment for blood blisters in general is antibiotic ointment, but that doesn't apply to me because antibiotics don't fight amyloid proteins. The only literature I can find about blood blisters associated with amyloidosis say NOTHING about how to treat them. It's just an indication that my illness is progressing. 
It's frustrating to watch myself fall, knowing there is no safety net below and never will be in my lifetime.
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