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Multiple Myeloma with Amyloidosis

Posts: 1
Joined: Mar 2010

I was diagnosed with multiple myeloma with amyloidosis in 2002. I had a stem cell transplant on 08/07 with was only 40% successful. The amyloidosis has affect vital organ, my kidney (now I am a dialysis patient), it is in my liver but my liver it working okay at this time. I have had fluid drained from around my heart and lungs due to amyloidosis. Is there anyone who has the same diagnosis? I have not talk to anyone with my diagnosis.

The medicine I was given is not affective. Now I am going to Boston University Medical Center, Amyloid Treatment and Research Center, Boston, MA on March 22 for a second opinion. I was told this is the best place in the world for my condition.

Posts: 1
Joined: Mar 2010

Hi Al,
You are absolutely doing the right thing by going to Boston! I have localized amyloidosis and travel there from Georgia to see Dr. Berk. While your 3 day evaluation will be rigorus, it will give you the answers that you need. If you would like to connect with other patients I suggest that you join our yahoo online group. We have 775 members and there are many that have both AL and MM. You can join the email group by following this link: www.amyloidosisonline.com. You can also check out the Amyloidosis Support Groups website at www.amyloidosissupport.com to see if we hold any face to face meetings in your area.

filimu's picture
Posts: 74
Joined: Aug 2010

- it took the doctors here so long to diagnose my husband that his kidneys were already too far along, plus he had multiple infections. He went from doctor to doctor, specialist to specialist. He knew for over a year that he was desperately ill, but no one could figure out what was wrong. One doctor, who had originally said throat cancer, then said, oh, just a bad cold... ended up throwing his hands in the air and saying it must be allergies!!! Finally somebody realized his kidneys were failing, and the specialist suspected amyloidosis, referring us to a transplant program. Sure enough, that's what it was, all along. They tried a marrow transplant, but it was just too late in the progress of the disease for him. The transplant itself was successful, but he wasn't strong enough to override the infections. And we didn't find the resources several years ago that I see on line now. I wish you the very best. With pro-active treatment, and a the things they've learned...you have a chance for a hopeful prognosis.

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