Amyloidosis Support Groups Support Community

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Familial Amyloidosis

By bellographix · New reply 2:50 pm
Discussion in Familial (hereditary) and TTR amyloidosis · 2 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 ...

Recurrent fevers and amyloidosis

By TomT · New reply 9:22 am
Discussion in Primary amyloidosis (AL) · 7 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 ...

Inspire members featured

By Brian · New reply November 4, 2009
Journal · 29 replies
Today Massachusetts General Hospital's Proto Magazine published a wonderful profile of nine Inspire members. Each of these stories underscores what we all know to be true -- that Inspire is a special ...

fed up!

By ready4glory · New reply November 4, 2009
Journal · 4 replies
I was DX over a year ago with Amyloid I have been to Boston three times. Finally on the last visit they said my AMyloid was secondary but they couldn't figure out secondary to what! Neither could my doctors ...

Enlarged tongue w/ridges for over 8 months

By a1d1ac1 · New reply November 1, 2009
Discussion in Help desk · 12 replies
I have had a severely swollen tongue with ridges for over 8 months now. Fat pad aspiration test-negative, tongue biopsy-negative. The docs keep telling me that my tongue is normal and not swollen. One ...

HIDS

By mommymanda · New reply October 20, 2009
Journal · 8 replies
Payton is now almost 4 and it seems like he just keeps getting new symptoms. It feels as if he never gets a break! As of right now we are on Kineret injections during episodes for 3 days and also on Humira ...

Itching associated with Primary Amyloidosis

By Constantvigil · New reply October 18, 2009
Discussion 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 ...

Your vote helps to raise money for research!

By T-Gayle · Posted October 3, 2009
Journal · 0 replies
Hello all ~ As a Al Amyloidosis patient, I am trying to raise money to donate for research. I am only asking for your VOTE in order to win. I have entered my handsome French Bulldog in the www.cutestdogcontest.com ...

Amyloidosis Support Groups and Blood Diseases

By Muriel · Posted September 29, 2009
Journal · 0 replies
www.mayoclinic.org/blood-patient-worksho p The second Living with a Blood Disease Symposium: A Comprehensive Workshop for Patients, Family and Friends Mayo Clinic Rochester, Minnesota May 8-9, 2010 Symposium ...

Winning a battle,still fighting the war

By Constantvigil · Posted September 17, 2009
Discussion 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
Discussion 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 ...

my daughter and husband

By 5cats · New reply September 2, 2009
Journal · 17 replies
my husband's father died in his sixties undiagnosed from a mysterious condition in the 1960's. at age 27, my husband had strange symptoms which took 2 1/2 years to diagnose- confirmed as amyloidosis and ...

Familial Amyloidosis Polyneuropathy

By joan45 · New reply August 26, 2009
Discussion 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 ...

Amyloidosis Support Groups Inc. - "Happenings"

By Muriel · New reply August 24, 2009
Journal · 2 replies
AUGUST 23 - POP'S RUN-FUNDRAISER - www.popsrun.org 29 - ROCHESTER NEW YORK – DR. SUZANNE HAYMAN/MAYO - NOTE CHANGE IN VENUE SEPTEMBER 5 – LABOR DAY WEEKEND 11 – David Jamieson Memorial Fundraiser - Hillview ...

symptons ??

By apr · New reply August 16, 2009
Discussion 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 ...

Guestbooks are now live!

By TeamInspire · New reply August 15, 2009
Journal · 6 replies
Hello everyone, Last week we mentioned that we'd be adding guestbooks to Inspire in the near future, and they are now live! We're very excited about this feature and hope you enjoy it. To check out your ...

5 minutes on the lysosome. Because it's time we know.

By StephLynStill · Posted August 13, 2009
Journal · 0 replies
So did you ever wonder what happens to the tadpole's tail? Does it just fall off? No actually. Lysosomes eat it. (autophagy: the cell's ability to eat itself...) And the webbing in our fingers and toes ...

Scheduled maintenance this evening

By TeamInspire · New reply August 12, 2009
Journal · 13 replies
All, Inspire will be performing database updates this evening starting at 8:00 Eastern. We expect the updates to take no more than 2 hours and the site will be unavailable at this time. We thank you for ...

Familial Amyloidosis and Neuropathy

By kennethpletz · New reply August 7, 2009
Discussion 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
Discussion 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 ...

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The Amyloidosis Support Groups Support Community connects patients, families, friends and caregivers for support and inspiration. The Amyloidosis Support Groups Support Community is sponsored by Amyloidosis Support Groups in partnership with Inspire.