MGUS: Please, let me know I not alone

Welcome back to Connect @momofthree1. @lisa54 recently joined Mayo Clinic Connect and is looking to connect with other people who have experience with MGUS. I’m so sorry to hear that you son’s health has not improved, and that he has multiple chronic issues. It sounds like he has been going to many different specialists. Are they all within the same care facility?

They are but he is just getting worse and as his mother I understand why he is now depressed and will not even go to the hospital when he should. He says “why Mom you know they won’t help and I do know that . I don’t understand but I continue to pray that he gets help somewhere.

How wretched that must be to watch. Is getting a second opinion from Mayo Clinic an option?

When he was first diagnosed they mentioned a study in New Jersey but our family could not afford the flying back and forth. I will talk to him about this.

Should Mayo Clinic be an option, here are the contact numbers for all 3 campuses in Minnesota, Florida and Arizona http://mayocl.in/1mtmR63 The people answering the phones are very knowledgeable. There may be a variety of different consultation options, for example some people come to Mayo once and then continue care closer to home with their local care team in consultation with Mayo experts.

There are several members who could share their experience with you about care at Mayo if you and your son are interested in their stories.

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

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.

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?

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

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.