Amyloidosis Support Groups Inc. - Centers of Excellence

When people ask where I should be treated now that I have been diagnosed with amyloidosis; I always tell them they have overcome the biggest hurdle. As in any rare disease that would be getting an accurate diagnosis. But with the many different types of amyloidosis(AL, AA, ATTR, CAA, SAA, Localized and more) one has to weigh convenience with the question of where to go for accuracy of diagnosis and treatment. There are TWO major centers of excellence with others on the horizon.
Boston University Amyloid Research and Mayo Clinic/ Rochester New York (both on our website www.amyloidosissupport.com). Both require a 3 to 5 day visit for a second opinion that is approved by most insurance companies and Medicare. Then after one is properly typed and a medical protocol is developed by the wonderful medical groups one can go to a "convenient place" near home and Boston or Mayo will work with your local doctors. For names of local doctors that know amyloidosis (they are few and far between) please e-mail muriel@finkelsupply.com.
Good Luck on your journey and we will try to help you.
Muriel Finkel


Muriel Finkel
President
AMYLOIDOSIS SUPPORT GROUPS
ASG www.amyloidosissupport.com
Toll Free 866-404-7539
National Organization Member of NORD
www.rarediseases.org

www.amyloidosisonline.com - Almost 570 have joined
"Don't Take Your Organs, To Heaven, Heaven Knows We Need Them Here"

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Muriel, do you know if they have Amyloidosis Support Groups in the Kansas City area? My husband lost his 2 year battle with Amyloidosis on March 21st. I am having a difficult time dealing with my loss and think a support group would help.

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Not yet we are working on it but we do have an on line widows group....contact Alexa Knight and Sue Smith.....you may also want to join www.amyloidosisonline.com as we will announce the meeting when it is formed....you can put yourself on digest if you don't want constant e-mails.......
Sue is turnips@cinci.rr.com
Alexa is alexaknight1@comcast.net
There are about 25 or so walking your walk on that list...maybe more as I'm not on it...
Love,
Muriel

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Thank you Muriel for the contact names.

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I am a military service member that is going through a medical evaluation board for discharge. I have previous kidney problems dating back to 2005, 2007, and 2009. In all three of these incidents I was hospitalized for extreme blood loss when urinating, requiring stent placement to relieve the kidney from failing. In 2007, they did a byopsy and found I had amyliods in my kidney.

I have requested a second opinion from civilian doctors rather than military doctors as they are not checking for amyloidosis. My question is: Since they discovered amyloids in my kidney and the severe bleeding that takes place is this a good clue that I have amyloidosis?

I am in California and I have an appointment with Dr. Vascio very soon for further evaluation. Thaks for whoever answers.

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If you have amyloidosis in your kidneys you could have one of three types of amyloidosis. We have an animation on the top right of our website www.amyloidosissupport.com under the American Map/Flag....it is 12 minutes long....please watch it and e-mail me at muriel@finkelsupply.com and join www.amyloidosisonline.com and you will LOVE Dr. Vescio.....we have a support meeting there soon...it is on our website....
Muriel
Amyloidosis Support Groups Inc.

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