Familial Amyloidosis Polyneuropathy

Info to both Ron C and Ken regarding your journies.
My husband has FAP (see above) and his 4 year episode
with this disease is almost unbelievable and much like Kens. Took about 3 1/2 years to finally diagnose correctly . Was not cidp as the neuro thought and his uncle died of FAP 20 years ago and it was in the records of the last neurologist. Did prednisone and immuran, got sepsis , then ivig, then plasma ph. All to no avail. Cleveland Clinic diagnosed him correctly and with his mutation. A bone marrow test will not be the deciding factor as heredity comes from the liver not bone marrow. Why in the world would they not test the blood or a bioposy from the ankle. My husbands blood test (a DNA) showed he had amyloidosis and also it is not cancer so why give chemo? Nothing showed on his bone scan *they were looking for cancer, Nor did the neurologist ever tell us he does not do DNA's. The dna is what it took for a diagnosis.

We were told at Mayo that he was too old for a liver transplant which is hard to understand when there are so many his age or older on lists for a liver,however we know it is very dangerous and also this type of amy actually progressis slower . In reality he may live longer with out a new liver so that is our feeling.No treatment or cure we were told. He is now in a trial that has been stopping the progression. This is our only hope now and we are thankful for that. He has not progressed to a wheel chair but does use a cane. A genetic doctor told us to check the gov clinical trials. He also went thru all of the treatments for cidp which was useless. You have to advocate for yourself and keep trying to find a road to a better end. I am scared to death regarding the new health care bill they are trying to pass. If they do away with Medicare it can be the end for us and without FDA approval of this drug which has stopped the progression we are at a loss. No matter what you may be Dem, Republican, or indendant we need to be heard. There are so many rare diseases that we need to continue to move forward on finding cures. . Do not let them take that away from us. So we are in our 60's and we are still a very important part of this country and can contribute and have contributed to this society all of our lives. Do not forget those in government may just find themselves in a health situation also in which may be critical. Would they like to join our ranks in a new health care plan. If it is good for us it is good for them too.We also have good Insurance right now but that will change as Obama had said in 2003 and 2007. Listen and learn and you will understand what is happening. Enough said.