MGUS: Please, let me know I not alone

What is Margaret's corner?

Yes , they are all in the St.Elizabeth medical group , he has" bandaids applied " to all concerns. Maybe that is all that can be done, I don't know but if it is why can't they say so. He just got out of the hospital with a lodged kidney stone and diverticulosis. It just never stops. Sorry about complaining, I do appreciate all the info and hope to get the time to learn about how to use this site and communicate with others very soon.

MGUS has a long name and what it means is that there is an extra M protein in your blood. I was diagnosed with this about 5 years ago and my blood is checked every 6 months to make sure that the protein level is stable. I have no special diet or any treatment. I see a hematologist/oncologist for monitoring. If the protein level changes, then further testing is needed. Yes it is kind of like a time bomb, but I have my faith and that allows me to keep going.

I am sorry, I just saw your post . I know your pain as we are now five years into this and nothing is headed up on the scale of good vs bad. Best of luck to you and yours

Does anyone take Actonel? I'm wondering if anyone has experienced side effects? I'm back on it for last 6 mos. I was taken off for over 2 yrs due to extremely itchy rashes. Now I'm high risk for fractures. My endo told me mgus may be a contributor. I noticed since I'm back on, the itchy skin, and slight rash is acting up. But worse, I'm getting sweats 24/7, and bad hip, and back pain. Im trying to take a 30 min walk , but gosh, soooo achy in hips, and back, I can't wait to get back home. Im going off this med and doing the natural route...supplements, exercise, good bone diet. I'm even
Making a bone broth, for added collagen, and amino acids, as well as some calcium in there. Please share if you heard of these side effects.

@bonniecanby You should know that the symptoms you mention, anemia, pvc's and lots of pain, are typical amyloidosis symptoms and signs. You are free to download/read my story at https://bit.Ly/1w7j4j8 i have about 200 symptoms & signs of amy. Of course, some may be related only secondarily, but they all spoken of by current literature. Morey Gertz of Mayo, and the Amyloidosis Foundation.com, and Alnylam Pharmaceuticals and other sites you can read. It is much easier now to diagnose and define various forms of Amy, incluging MGUS, MM, AL, Alzheimers, Familial fatal insomnia, etc. Today's great clinics and labs can help you, but very few local labs can do anything. Mayo-MN, ARUP, Sloan-Kettering, Mass-General, Stanford, etc. can do it.

Hello @billh,

It has been awhile since you have posted. I just wanted to know how you were doing with your MGUS? We have some new members who may be interested in hearing from you and your experience with your journey with MGUS.

@dazlin,

If you don't mind me asking, are you taking actonel because of osteoporosis? If so, I think you may be interested in the following discussions focused on osteoporosis and the treatment and side-effects:

- Treating osteoporosis, https://connect.mayoclinic.org/discussion/hi-im-new-to-the-site-and-am-interested-in-treating-osteoperosis/
- Side effects of bisphosphonates, https://connect.mayoclinic.org/discussion/side-effects-of-bisphosphonates/

Each of these discussions has members that have discussed actonel and its side-effects.

Yes Justin, I'm on it for osteoporosis, MGUS being a contributor. I'll check out that link you sent, THANKS!!

I am going to mayo on fri. for a surgical consult. here in az. Thanks for your info. Maybe they will recheck the blood results from Illinois.