MGUS

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

Liked by maryy

@afc

Recently diagnosed with MGUS and need advice…..physicians, nutrition, etc.

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write this information to Minnesota Department of Health and ask “to whom
do I turn now?”

Something else you could do is call or contact Senior Linkage
Line–1-800-333-2433–they handle how to advise people in their needs,
esecial those who haven’t got a direction to turn.

See their website too.

irvkay312

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Hi there, I have been off this chat line for quite awhile. This is a fast explanation of what has been going on. My numbers are stable which both my hematologist and I can only credit the 7 grams of curcumin that I take daily. I also have got the anemia controlled by the b complex injections That I get weekly. I also have a-fib with all the problems that that disease entails. I have osteoarthritis and osteoporosis and get injections fpr that. I have had had two compression fractures in the last 6 months caused from falls and am now scheduled for a knee replacement on wed. I have IGM mgus. Is this all connected I don’t know. However many of us are suffering with the same things. Any onne can send me a message at anytime.

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@bonniecanby

Hi there, I have been off this chat line for quite awhile. This is a fast explanation of what has been going on. My numbers are stable which both my hematologist and I can only credit the 7 grams of curcumin that I take daily. I also have got the anemia controlled by the b complex injections That I get weekly. I also have a-fib with all the problems that that disease entails. I have osteoarthritis and osteoporosis and get injections fpr that. I have had had two compression fractures in the last 6 months caused from falls and am now scheduled for a knee replacement on wed. I have IGM mgus. Is this all connected I don’t know. However many of us are suffering with the same things. Any onne can send me a message at anytime.

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Welcome back to Connect, @bonniecanby. You’ll notice that the community has had a major renovation and rejuvenation since you last visited. I hope you’ll poke around a bit. For example there’s lively conversation here about A-fib where you can connect with other members managing their condition well http://mayocl.in/29iD8aJ. Likewise here for Managing osteoporosis http://mayocl.in/29cSR8d and other related discussions in the Bones, Joints & Muscles group https://connect.mayoclinic.org/group/arthritis-and-joint-conditions-268850/?tab=discussions

I’m sure @lisa54 appreciates the update on your MGUS. She recently joined Connect.
I just did a quick review of research regarding curcumin and MGUS. While the studies look promising, long-term side effects are still being studied. It is recommended to take with clinical supervision as you are doing with your hematologist. Do you know how the dosage of 7 grams was decided?

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@afc

Recently diagnosed with MGUS and need advice…..physicians, nutrition, etc.

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Thank you he is only 48 years old ,we live in Kentucky. He also has a holes in a bone in his leg.

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@bonniecanby

Hi there, I have been off this chat line for quite awhile. This is a fast explanation of what has been going on. My numbers are stable which both my hematologist and I can only credit the 7 grams of curcumin that I take daily. I also have got the anemia controlled by the b complex injections That I get weekly. I also have a-fib with all the problems that that disease entails. I have osteoarthritis and osteoporosis and get injections fpr that. I have had had two compression fractures in the last 6 months caused from falls and am now scheduled for a knee replacement on wed. I have IGM mgus. Is this all connected I don’t know. However many of us are suffering with the same things. Any onne can send me a message at anytime.

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Actually the dosage was is Margaret’s corner. I started much lower and built up the dosage to 7 grams. My hematologist is recommending this dosage to some of he other patients. and having good results. I am being closely watched by him.

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@bonniecanby

Hi there, I have been off this chat line for quite awhile. This is a fast explanation of what has been going on. My numbers are stable which both my hematologist and I can only credit the 7 grams of curcumin that I take daily. I also have got the anemia controlled by the b complex injections That I get weekly. I also have a-fib with all the problems that that disease entails. I have osteoarthritis and osteoporosis and get injections fpr that. I have had had two compression fractures in the last 6 months caused from falls and am now scheduled for a knee replacement on wed. I have IGM mgus. Is this all connected I don’t know. However many of us are suffering with the same things. Any onne can send me a message at anytime.

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What is Margaret’s corner?

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@afc

Recently diagnosed with MGUS and need advice…..physicians, nutrition, etc.

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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.

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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.

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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

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@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

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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.

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@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.

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@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.

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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.

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@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

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@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.

Liked by dazlin

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@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

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

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@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.

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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.

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