Already a member? Sign in
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Well, it finally showed. After countless tests always being negative, another nerve biopsy finally showed amaloids. Now, it appears the damage is already done and won't be able to be reversed? I meet with an Oncologist next Thursday - guess I'll see what my options are then. Right now, reduced to being in a wheelchair and very difficult even getting out of the chair for bathroom, etc.
Anyone else recently diagnosed with amylodosis?
Kennethpletz::
I believe there are quite a few on this site with Heridity Amyloidosis. After several years of not getting any where ourselves my husband finally was diagnosed, but wrongly diagnosed with cidp. He also went thru several treatments that did not help him. Anyway he does have Familial Amyloidosis diagnosed by doing a DNA in Cleveland Ohio. We were from Ohio not in Tn. Neurologist said he did not do a dna because Medicare does not pay for it. Wrong again. Well my husband is not at clinical trials at John Hopkins. My feeling is that is probably your only thing going now. Of course a liver transplant can be done but there is a long waiting list plus we felt with Familial Amy he most likely live longer without the liver transplant due to his age(so Mayo says) and the risks involved. Unfortunately there is not much help now except trials. Go to Gov trials .com Also if on a trial you cannot then recieve a liver transplant while on the trial. So far this trial seems to have stopped the progression. We go for his 6 month checkup so we shall know more then. As long as it is working he will stay in the trial. Some encouragement: My husband is walking with a cane, and is doing better now that he is not being treated from that neurologist. His pain is less also. There was a time that he could not even put the sheets on him at night as he hurt so much. He also would fall daily. He has gone thru alot including sepsis, shingles, sweats, lots of pain. All better now so there is some hope. Good luck and keep in touch
Joan
Kennethpletz::
I believe there are quite a few on this site with Heriditary Amyloidosis. After several years of not getting any where ourselves my husband finally was diagnosed, but wrongly diagnosed with cidp. He also went thru several treatments that did not help him. Anyway he does have Familial Amyloidosis diagnosed by doing a DNA in Cleveland Ohio. We were from Ohio notw in Tn. Neurologist said he did not do a dna because Medicare does not pay for it. Wrong again. Well my husband is now at clinical trials at John Hopkins. My feeling is that is probably your only thing going now. Of course a liver transplant can be done but there is a long waiting list plus we felt with Familial Amy he most likely live longer without the liver transplant due to his age(so Mayo says) and the risks involved. Unfortunately there is not much help now except trials. Go to Gov trials .com Also if on a trial you cannot then recieve a liver transplant while on the trial. So far this trial seems to have stopped the progression. We go for his 6 month checkup so we shall know more then. As long as it is working he will stay in the trial. Some encouragement: My husband is walking with a cane, and is doing better now that he is not being treated from that neurologist. His pain is less also. There was a time that he could not even put the sheets on him at night as he hurt so much. He also would fall daily. He has gone thru alot including sepsis, shingles, sweats, lots of pain. All better now so there is some hope. Good luck and keep in touch
Joan
Joan, thanks for the encouraging news. I'm glad to hear your husband is doing better on the trials. I will see the Oncologist today so hopefully they will have a plan. I am 59 so I don't know if that's too old or not for a liver transplant. Guess I'll find out soon enough.
Thanks again and best wishes.
Add to the discussion