Is there anything to help stop or slow progression of MGUS?

@dcuste
It’s always frustrating when you’re trying to get answers from physicians and they’re not forthcoming. Don’t be discouraged, though, try and get a phone call or telemedicine appointment set up so that the objectives can clearly be explained to you. You have a right to know what the treatment plan will be and what the areas of concerns are.
I am not a physician and this medical terminology can be tricky, but my understanding in very broad, laywoman’s understanding is that the MRI looks at the architecture of the body and a PET scan is looking at soft tissue.
https://my.clevelandclinic.org/health/diagnostics/10123-pet-scan
It’s important to remember that a thorough diagnosis will require that they look at all the options so don’t let yourself get nervous when more tests are ordered. The more information that your physicians have about your body that better they’re going to be able to treat you.
To advocate for yourself though and get some more information since they have already scheduled a PET scan.
Let me know how this goes for you.
HUGS!

I may be confused, but I think my HMO uses the term GP or General Practitioner for PCP. After my Oncologist/Hematologist responded to my email without concern for the MRI findings of AVN, I did email my GP telling him the background of the MRI, referenced this study https://mss-ijmsr.com/mri-spectrum-of-avascular-necrosis-of-femoral-head-in-patients-treated-for-covid-19/ and asked if he provide me with a referral to a specialist, such as an orthopedic surgeon or rheumatologist, to explore treatment options for AVN. From that study I'm pretty sure my AVN is stage 1 and is a result of steroid use.
I haven't heard anything back from my GP yet but I did get a letter informing me to schedule a PET scan appointment. I have no clue why my HMO now thinks I need a PET scan.

I just sawca hopeful blurb by a physician at Sloan Kettering that her 12 week study of putting a limited number of patients on a plant based fiber diet to prevent MGUS progression had positive results. Patients were 86 percent compliant.
It was a small study for a short time but two MGUS patients whose values were fast tracking in the wrong direction had this trend stopped - maybe even regress - I can’t remember.
Since I am on a plant based diet I thought this was great. I don’t think dairy was allowed. I do yogurt, milk in my coffee and very occasionally have seafood. BUT I have had MGUS for 23 years.

@loribmt
Lori, indulgence is my superpower!
Thanks. We had a great time with “kids” their kids and their kids’ kids. ❤️

😅 Patty, it sounds like you had a wonderful holiday season filled with lots of yummy temptations!! Sometimes you just have to indulge.

@dcuste
I think I’d be on the market for a PCP to be the hub for your treatment providers. They don’t know about all the specialty services but they should know who to hook you up with. I look for a good internist to serve as PCP.

@8positive

How’s you do for holiday weight gain? I gained 7 pounds!

In reply to the member who asked if there was anything that could be done to
prevent MGUS from progressing, Dana Farber has some clinical trials using a plant based diet. (See SparkCures website) I have also seen trials with Metaformin and biaxin. In addition, a normal BMI and weight has support in the medical literature for decreasing risk.
There now appears to be controversy regarding treating high risk SMM and or high risk MGUS. The algorithms about risk tend to classify patients differently. Some MM subspecialists believe there is still too much uncertainty in many cases as to whether exposing patients to toxic MM drugs makes any sense for them. Not every “high risk” SMM and MGUS patient is going to progress to MM.
i have had MGUS now since 2002 - probably before - it was found by an astute Mayo technologist then based on a total protein level that was one decimal point below normal. My local reference lab and pcp would never have picked up on this - especially since I had major surgery within the previous year for a ruptured appendix that put me in the hospital for two weeks. My upper level values (cbc and comp chems) have always been normal except that one total protein value.

There are some well respected medical teaching facilities in my local area. I'm with a HMO and my current GP is not very accommodating so I mostly use the mobile office for walk-in service. It comes to town twice a month. Never has the same doctor. It has been out for upgrades and doesn't get back on the road for another month or two.

I have the MRI DICOM files and can email the whole series anywhere in the world. I'm pretty sure there is no reason to actually be seen in person.

There are AI MRI readers that are approved by the FDA, but mostly for brain issues. It will probably be a long time before they are available for use by the general public.

@colleenyoung
I added colleenyoung into this post as I had seen her post in the past on second opinions at Mayo. She is one of the mentors on the forum. Or perhaps your general practitioner can recommend a radiologist or other specialist for a second opinion. Are you near a teaching hospital?