Does anyone else have MGUS?

My husband was diagnosed with MGUS not long ago. He went to a cardiologist in Jacksonville Mayo Clinic where he was diagnosed and the dr ordered blood work (Protein electrophoresis in blood and urine) and a special CT Scan. Now after being diagnosed with Cardiac Amyloidosis he is taking a special medication VYNDAMAX to prevent the continuous progression of this condition. He is doing well. He has follow up appointments with Hematologists and the Cardiologist specialized in Amyloidosis.
Yes I recommend that you make appointments with a Hematologist Oncologist. Get well.

Thank you for replying. I’m sorry you’re going through all this with the chemo. Sending Prayers your way. It’s nice that you are on here and helping others.

Wow, I’m learning so much from all of you in here. I’m going to definitely see the specialist. I have no idea why my doctor wants to wait. It makes no sense. Thank you so much. I’m very glad your husband is better.

@fayeraye Sometimes our primary doctor is overwhelmed with the busyness of their practice these days. You "drive the boat" and need to advocate for yourself. Find out from your insurance if you can self-refer to a hematologist oncologist that they cover. If not, go back to your primary and insist on a referral now. It may take going to his/her PA.

I look forward to hearing what you find out!
Ginger

Thank you for the advice. I will call my insurance on Monday. I will keep you posted.

A decent haematologist that knows about MGUS in all its glory (aka the various forms and the unique patterns they have), rather than one that doesn’t, would be optimal, when it comes to asking to see a haematologist…I’ve had one for the last couple of years who isn’t interested in the slightest, and I end up educating him on what’s happening much more than he has ever attempted to educate and support me..eg: he called me weeks after my last appointment and was sounding quite uncertain about the significance of consistent decline in kidney function, and I just had to interrupt and gently let him know that there is such a thing called monoclonal gammopathy of renal significance..hehe! I’m loving where my tax dollars went, that’s for sure 😉

Good morning @fayeraye .

I was diagnosed with IgA Kappa MGUS on 15 February 2023 - no M spike, 5-8% plasma cells in bone marrow. My husband passed from IgA Lamda Multiple Myeloma (MM) on 23 July 2022. I am hopeful because his course of development was a long one. I believe he was under diagnosed by the local hematologist / oncologist. I didn't know then what I know now. A MM specialist is a must. Steve ended up with one, but it was too late. I currently have two Oncologist who's practice is specifically MM / SM / MGUS - one for a whole food, plant-based study I am involved in out of Memorial Sloan Kettering in NYC and one that is in Boston. I live in North Carolina and will get an MM / SM / MGUS Specialist closer to home before too long. My local Hematologist / Oncologist is not the same as the neglectful one that professed to be an expert with Steve.

Prior to diagnosing me, my local Oncologist conducted a bone marrow biopsy, PET-CT scan, 24 hour urine analysis, and plethora of labs. I also had my Primary Provider, who found the MGUS due to my having mentioned experiencing some neuropathy and Steve's disease course, perform an updated bone density scan for my new baseline at 65 - had one many years ago and there were no changes.

Keeping your stress down, being physically active, eating well, and being proactive in your lifestyle are believed to be beneficial. The Mayo Clinic Connect is a very helpful forum as well.

Teri

I am so very sorry for what you went through with your husband. That should have never happened. My pcp never explained anything to me. He just kept running test after test because I kept getting abnormal numbers. I know I had an abnormal on IgM. Then he said I had MGUS and I will be re-tested every 6 months. So , I went to the internet.

You're on the right path. Time to advocate for a specialist to provide you with knowledge, monitoring and support. There must be a myeloma site that can help with your search for the specialist in your region. Sometimes you may have to travel a wee bit, but worth the effort. One of our Mentors on this site may know of such a place.

@allstaedt57 and @fayeraye The International Myeloma Foundation has a great website, that can help you connect with resources. Did you know September is National Blood Cancer month?

Checking in your area, look for a hematologist oncologist. Look into their education and background. I am in Oregon, and was extremely fortunate to be able to get under the care of a doctor who practiced at Mayo Clinic before moving out here 7 years ago!

https://www.myeloma.org/
Ginger