MGUS: Please, let me know I not alone

Posted by bonnie canby @bonniecanby, May 21, 2012

i Have gotten desperate enough to try to get an appointment at Mayo in minnasota for mgus. anyone out there that is also been diagnosed with this time bomb.
I am also suffering with anemia and pvc's and a lot of pain. please let me know that I am not alone. bonne

Interested in more discussions like this? Go to the Blood Cancers & Disorders group.

@momofthree1

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

Jump to this post

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.

REPLY

@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.

REPLY
@billh

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.

Jump to this post

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.

REPLY
@momofthree1

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

Jump to this post

@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.

REPLY
@momofthree1

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

Jump to this post

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

REPLY
@oldkarl

@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.

Jump to this post

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.

REPLY

Anyone in Jacksonville Mayo Clinic …I would like to know who you use for your Oncologist Dr in the myeloma field…Please share.

REPLY
@oldkarl

@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.

Jump to this post

Hello @bonniecanby, you mentioned awhile back that you were having a surgical consult? If you don't mind sharing, how did it go?

REPLY
@dazlin

Anyone in Jacksonville Mayo Clinic …I would like to know who you use for your Oncologist Dr in the myeloma field…Please share.

Jump to this post

Hello @dazlin, if you don't mind me asking, have you sought out an appointment at Mayo Clinic Jacksonville?

REPLY
@dazlin

Anyone in Jacksonville Mayo Clinic …I would like to know who you use for your Oncologist Dr in the myeloma field…Please share.

Jump to this post

Yes Justin, I called scheduling. They gave me #to oncology dept. I don't know which Drs handle MGUS or myeloma.

REPLY

I haven't called oncology dept yet, but I will next week. Hopefully they'll give Drs I can review and make sure my medical insurance covers. I really appreciate you asking!

REPLY

Justin, I just received my itinerary…they have scheduled me to see my oncologist nurse, instead of the dr. I'll go along, since it's just bloodwork. ( I wanted to switch drs) If anything spiked, I feel to find another oncologist. I also emailed them about this nurse accepting my insurance, since, she was taken out of network during my last visit . Took me 6 mos to battle. I now was told to contact billing to inquire whether Mayo covers this visit with her. I'm in a rough place as we speak, losing a beloved dog in Feb. and now, shockingly, a few weeks later, my best boy Maverick, (silver Lab)with bone cancer. SO STRANGE, I'M HERE FOR CANCER, NOW MY DOGS HAVE IT??? So ill make my calls when I can . I'm beside myself. One moment, at a time here. Just wanted you to know, since you took time out for asking. Thank you for asking…Linda

REPLY
Please sign in or register to post a reply.
  Request Appointment