[KathyM]

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.

[Rmdctc]

Could you please explain what amyloidosis is? Also I have heard that with blood blisters some drs will drain them. Just an idea. I do hope they get better so your not in so much pain.

[KathyM]

It's like Alzheimer's of the entire body - the same amyloid protein that attacks brains, but with me it's produced in my blood/bone marrow and distributes the plaque everywhere. It's in my nervous system, causing polyperipheral neuropathy and autonomic neuropathy (AN). The AN causes GI problems, orthostatic hypotension, and heart rhythm disturbance. It's in my kidneys, causing nephrotic syndrome at this point. It's in my heart - dilated aortic root at risk of aortic dissection. It's in my eyes, causing corneal dystrophy and eventual blindness - my doc is amazed I can still see. My face has also become distorted and mostly paralyzed.

It's also settling in my brain and is causing dementia - I forget sometimes how to open a door, pick up a spoon, or write letters and numbers. I can't follow directions. I used to be highly organized and worked well under pressure. During my "episodes," simple tasks like putting clean dishes away is a major task for me. I'll look at each object and it looks familiar, but I don't know what it is and where it goes. Spoons will get placed in the refrigerator or in the cupboard. When I'm forced to act quickly for one reason or another, I completely freeze. I'm quite certain if my house caught on fire, I'd freeze in place and have no idea what to do.

Any form of surgical procedure will backfire - the trauma to the area will cause the amyloid to speed up and overproduce in that area.

I don't qualify for a bone marrow/stem cell rescue because my type is hereditary - the gene will continue to instruct my blood to produce this protein.

Thank you for asking, and thank you for your well wishes.

[January]

Kathy, I wish so much you didn't have this disease. I don't know exactly what to say, but I can give you a hug in hopes that it will help at least a little bit.