Does anyone else have MGUS?

Welcome to Connect! It’s so comforting to find someone who feels the same way, doesn’t it? Not having doctors take you seriously is so frustrating when you know something isn’t right. I was just going to echo @cheft and suggest having a second opinion, preferably at a larger teaching hospital like Mayo.
If you’d like to start the application process for a visit to one of Mayo’s 3 campuses, here’s the link to their home page. http://mayocl.in/1mtmR63
The coordinator who takes your call will take your information and guide you from there.

The doctors at Mayo work collaboratively between departments to get you the best treatment with hematologists, cardiologists, etc.. They take patient care very seriously.

You really need someone who specializes in blood disorders and it sounds like your current hematologist might not be up to the calling. Are there any other hematologist/oncologist you see can locally or a larger, teaching clinic nearby?

I was diagnosed with Mgus about 20 years ago and told there was a small chance that anything would come it.I also have neuropathy which has gotten very serious. In the last four years I have had four toes amputated due to ulcers . I have no feeling in my feet and lower legs, my hands are often numb and I have constant cramps in hands and feet. Over the years I have seen many doctors and it is only recently that I have been told of the connection between neuropathy and Mgus. I have told my four children to get tested and two of them have been told by their doctors that they cannot be tested unless two family members have Mgus. Big problem -- I am the only family member alive. Now I am faced with decisions about pre-cancer treatments. I am almost 90. Is treatment advisable or should I just let nature take its' course?

I'm searching for that now. My insurance has limits and the Mayo clinic isn't covered. I am hoping to find one locally.

Mayo Clinic also partners with select medical facilities in other states who have met the high standards set by Mayo. I’m not sure if there is a clinic or hospital located in your state but here is a link to the map so you can possibly find a location near you. Mayo Clinic ... Care Network https://www.mayoclinic.org/about-mayo-clinic/care-network/members/map
Other options would be university hospitals or larger research hospitals. Are you near a larger city?

I live in Henderson, NV. I found a new hematologist I'm calling tomorrow. I'll keep you posted thank you for your information. I'm checking with the University Medical Center near me. I think getting a second opinion is the first step. My current Dr didn't even tell me about the diagnosis. I found it in my paperwork, which I now have to carry my medical record with me. This has truly been an experience. And I'm so glad to have you now.

I have tried for a second opinion at the Mayo in Jacksonville, but I was informed they are not taking any patients with a MGUS diagnosis, and I’m a Mayo patient. There’s a 1-2 year wait. So my PCP referred me to MD Anderson and I have an appointment on Friday. I’m hoping the doctor will answer my questions and explain what’s going on instead of dismissing things.

It’s so frustrating when you know you’re not well and your doctor is dismissive! In your case, you weren’t even told about your diagnosis. I’m so sorry you’re going through that. You should have much better attention and care at the University Medical Center.
We have a discussion in the forum on
How to get off to the best start with a new specialist.” You might find some useful tips in the conversations. I’ve posted the link below.
Your Tips on How to Get Off to the Best Start with a New Specialist: https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/ --

I’ll be nudging you with my elbow tomorrow to make that call. 😅 Good luck and let me know what you find out, ok? Hugs.

Unfortunately, the need for appointments can outnumber the availability and that’s very frustrating for patients. I’m glad you were able to get in with MD Anderson. They’re an excellent cancer center too. They have a similar standard of care as Mayo and I would expect your doctor will listen to you and not be dismissive.
Do you have a list of questions all ready to go?

Sorry that some of you have had bad/poor luck in finding medical support. My oncologist (Minneapolis, MN) follows me. After more initial testing, she now repeats all the bloodwork (including Light Chain info) annually. So far, so good! (Diagnosed about 6 years or more ago, after several anemia-range blood counts.)

Thank you, Lori. I honestly felt that I was losing my mind. It is wonderful to be amongst people who understand.