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Active discussions
Familial Amyloidosis
- By bellographix · New reply November 12, 2009
- In Familial (hereditary) and TTR amyloidosis · 4 replies
- Hello all, my father past away in 2004 from Amyloidosis and I wanted to know what I should do to either test to see if I or my sister inherit this? Any suggestions? Thank you ...
The 2 fronts of amyloidosis
- By apr · New reply November 11, 2009
- In Primary amyloidosis (AL) · 2 replies
- Our Mayo Dr. explained that amyloidosis attacks on 2 fronts--organs and blood. Does anyone know more about this???? My husband 's bloodwork is still ok, but we are afraid his organ involvement is growing ...
Recurrent fevers and amyloidosis
- By TomT · New reply November 11, 2009
- In Primary amyloidosis (AL) · 10 replies
- I was diagnosed with amyloidosis and multiple myeloma in February of 2008. I receive care from Mayo Clinic in Jacksonville Forida. I have been on a three drug treatment that has been very efffective in ...
Enlarged tongue w/ridges for over 8 months
Itching associated with Primary Amyloidosis
- By Constantvigil · New reply October 18, 2009
- In Primary amyloidosis (AL) · 3 replies
- My wife was diagnosed with Primary amyloidosis three years ago. Melphalan has brought her Lambda count down to the normal range so she's been taken off it. However, she has intense itching, especially ...
Winning a battle,still fighting the war
- By Constantvigil · Posted September 17, 2009
- In Primary amyloidosis (AL) · 0 replies
- My 72-year old wife was diagnosed with Primary amyloidosis 3 years ago and given 6 months to live. She's still fighting it but the doctor has stopped the chemo (melphalan) for several months because her ...
Meds for ATTR
- By kennethpletz · New reply September 6, 2009
- In Familial (hereditary) and TTR amyloidosis · 6 replies
- Saw the hematologist today and she confirmed it is indeed familial amyloidosis. They sent off blood for dna sampling to determine which strain it is. In the interim, she prescribed Dolobid (Diflunisal ...
Familial Amyloidosis Polyneuropathy
- By joan45 · New reply August 26, 2009
- In Familial (hereditary) and TTR amyloidosis · 1 reply
- 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 ...
symptons ??
- By apr · New reply August 16, 2009
- In Primary amyloidosis (AL) · 10 replies
- My 48 year old husband was diagnosed with systemic primary AL two years ago. He has had a stem cell transplant at Mayo with the followup chemo. He is currently taking Revlimid, on 21 days, off 7. He has ...
Familial Amyloidosis and Neuropathy
- By kennethpletz · New reply August 7, 2009
- In Familial (hereditary) and TTR amyloidosis · 2 replies
- I haven’t really seen much mention of familial amyloidosis and neuropathy mentioned. I have severe neuropathy – went from cane to walker to now a wheelchair. My legs are so weak and they feel like tree ...
hand pain
- By justinelvn · New reply July 29, 2009
- In Primary amyloidosis (AL) · 10 replies
- does anyone out there have pain in their hands --supposedly carpal-tunnel (SUPPOSEDLY CAUSED BY AMYLOID) and if so what do you do for pain ...
Amyloidosis in the Lungs
- By styxx18 · New reply July 28, 2009
- In Localized amyloidosis, CAA, cutaneous amyloidosis, and others · 19 replies
- Hi i'm a new member my name is Stacy and unfortunately my mom has localized amyloidosis in the lungs. I'm trying to find out if anyone out there has the same diagnosis. She has a really bad cough to the ...
Doctors response to Amyloidosis information
- By Fulviaschild2 · New reply July 26, 2009
- In Primary amyloidosis (AL) · 11 replies
- I would like to know how people's doctors have reacted when they were told that their patient (your loved one) had amyloidosis. I plan on taking the pamphlet about amyloidosis to each doctor. They missed ...
Familial Amyloidosis
- By RON-C · New reply July 13, 2009
- In Familial (hereditary) and TTR amyloidosis · 14 replies
- Interested in talking with other people who have this type of Amyloidosis. I received a liver transplant in 1997 at the Mayo Clinic. Also interested in new research and the development of pharmaceutical ...
Amyloidosis/Cardiac
- By Jennie60 · New reply May 12, 2009
- In Treatment centers, health insurance and financial issues · 3 replies
- Is there anyone who has information on Amyloidosis and treatment at Emory ??? Do you know someone who was treated there??? Dr.'s name??? Thanks in advance ...
Amyloid Question regarding symptoms
- By sg725 · New reply April 10, 2009
- In Treatment options · 5 replies
- I am a military service member who in the past have had a byopsy finding amyloids in my kidney. Aside from that and suffering from severe bleeding in my kidneys when they act up, is this a good indicator ...
Another Statin Question
- By Thumbelina · Posted April 7, 2009
- In Primary amyloidosis (AL) · 0 replies
- has anyone experienced a negative statin effect pertaining to kidney function? My husband takes lipitor and the 2 times he went off it for 1 to 2 months his urine protein spill dropped close to half (12 ...
Bladder Amyloid
- By cathyb · Posted February 6, 2009
- In Primary amyloidosis (AL) · 0 replies
- Anyone out there that has been diagnosed with amyloid of the bladder? Also looking for anyone has had the DSMO bladder washes, Thanks,, Cathy ...
Where to be treated
- By cathyb · New reply February 5, 2009
- In Treatment centers, health insurance and financial issues · 3 replies
- I was diagnosed with bladder Amy three years ago in Florida, went thru the whole process of tests, urinalysis, biopsy, and on and on. The end result was I was told not to worry, it is very slow growing ...
Amyloidosis and IPF
- By Mommalina · Posted January 9, 2009
- In Primary amyloidosis (AL) · 0 replies
- Does anyone know if there is any known relationship between AL and Idiopathic Pulmonary Fibrosis ...
