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Posts (8)

Sep 10, 2016 · Waldenstroms and amyloidosis in Blood Cancers & Disorders

I went to Mayo Clinic in 2012 when my brother had a stem cell transplant for amyloidosis. There are different types of amyloid, his affected his nervous system. He has done well since his stem cell transplant. There is an amyloidosis research consortium where you can get more information. My brother went to DC last year to attend a forum where the FDA was present to hear patient stories first hand.

http://www.amyloidosis.org/amyloidosis-research-consortium/

Mayo is the best.

irishk

Jun 14, 2016 · Current diagnosis is Amyloidosis and multiple myeloma in Blood Cancers & Disorders

Hello Jan,

I had a successful SCT at Mayo in Feb., ’12 and I am living a fairly normal life. I was lucky to have very little organ involvement but I did suffer from nerve pain so much that I was up to 50 mg of OxyContin twice a day and another 3-4 10 mg oxycodone for break through pain. Needless to say, I was in the fetal position in pain without the narcotics. Lyrica was and is a miracle drug for me. I was able to reduce the oxy by 80%. After the SCT I was eventually able to get off the narcotics completely. After a few years I was still feeling pretty lethargic from the Lyrica and I am now only taking 75 mg 2 to 3 times per day with the help of a very low dose of 50 mg of tramadol once a day.

Good Luck and know that there are a lot of good stories coming out of the Amy / MM clinics around the country and especially from the Mayo.

Pete Cannon
Seattle

Apr 8, 2016 · Treating Osteoporosis in Bones, Joints & Muscles

Mohavegal, good your Dr. says OK. I know the lab range says up to 100. Is your primary care Dr. in an Integrative Care Practice or a Functional Mediciine Dr ? They usually want Vits in a much higher range then conventional Dr’s.

K

Apr 8, 2016 · Treating Osteoporosis in Bones, Joints & Muscles

Mohavegal,

Did the Dr. tell you to take so much Vit D ? My Endo said no one should ever take more then 1 or 2000 without a Dr’s suggestion. I have never heard any Dr. say Vit D should be 70 and I have asked many Endo’s and Internists. They all say it needs to be over 30. I just asked a University Geriatrician who works in Endo/Osteoporosis clinic and she said Vit D should not be over 50, they just do not know enough yet if it is safe when higher then 50. I would have to go back and check Dr Ott’s website but I think that she recommends a Vit D level between 40 and 50. I read an article in Nutrition Action many years ago on a suspected connection between high Vit D and pancreatic cancer.

k

Apr 3, 2016 · Treating Osteoporosis in Bones, Joints & Muscles

Thanks you Colleen. Inspire has many people asking pertinent questions on all aspects of Osteoporosis and I have learned so much.

K

Apr 3, 2016 · Treating Osteoporosis in Bones, Joints & Muscles

Dr. Susan Ott in Seattle, a bone researcher, has a very good website for patients and clinicians. You can click on any of the subjects and get very good information.

http://courses.washington.edu/bonephys/

Moderator, not sure if it is OK to tell people about the Inspire website or not with many topics on osteo.

k

Mar 31, 2016 · Would like to know people's experience using Fosomax. in Bones, Joints & Muscles

How can I join an osteoporosis discussion group ?

I would like to know if there is any evidence that an alkaline diet is good for the bones as some osteoporosis experts, non MD’s suggest ? Thank you.