Does anyone else have MGUS?

Yes. It's still MGUS 5% plasma cells. I will followup every 4 months. I also joined the PCrowd Study at Dana Farber. Thank you for following up.

@marylou329, just checking in. Did you get the results of the bone marrow biopsy? How are you doing?

Does anyone else with non-IgM MGUS get pain in their bicep and thigh muscles. I don't know if it is something else or another symptom. I won't be seeing the haematologist for at least another 2 months (haven't even seen one yet still have only been given my diagnosis but nothing else) as I have been classed as a category 2, which in Australia means you will be seen sometime within 60 to 90 days.

There are a lot of groups on the Internet where members share their experience with MGUS OR Multiple Myeloma. I think it’s important to distinguish anecdotal information from peer reviewed medical research results.
Although I enjoy reading the experiences of others, I rely on my medical team to sort through it all. I do bring questions…lots of questions…when I visit, many of which are generated from comments I read here. I do read about research and often have it on my list to discuss when I see my hematologist/oncologist.
There is a lot to consider, even when deciding if a herbal supplement might be appropriate to add to your regimen. Some seem harmless enough but impact your blood sugar, thus compromising the impact of certain medications. Lots to consider, so first I ask, then we decide together if it might be of benefit.
I have read some pretty crazy stuff on some of these social media sites, so I do not presume anything that I read there is, or is not valid until I do some research on my own. If it’s something I would like to try, I then ask my docs about it and only then decide.
Have a great weekend, y’all!

Patty

I had read somewhere here that it is wise for those with MGUS to consult with a doctor with expertise in MGUS. So I talked further about this with my hematologist/oncologist. Although he treats many people who have blood cancers and is affiliated with a respected hospital here in NJ, he said it was good advice to consult with a true MGUS specialist at Mt. Sinai in NYC. Why he didn't suggest this to me 4 years ago when I was first diagnosed, I don't know --- perhaps this is just one of many examples of how he is not forthcoming and an indication I should move on. Unfortunately, travelling to NYC is very difficult. Are there any NJ folks out there with MGUS who are satisfied with their hematologist/oncologist? You may communicate with me via my email if you wish.

I found some of the references here helpful and thought I would pass along.
"What is MGUS in Relation to Multiple Myeloma?" POSTED: OCT 19, 2023
https://healthtree.org/myeloma/community/articles/what-is-mgus

Thank you Leslie. I pray for all of us. 💜🙏

That’s what I was as thinking. It’s supposed to be very treatable especially when caught early. All the best to you! Let us know okay? 🥹

Many biopsies coming up at Mayo, for Amyloidosis.

I’m sorry you have pain in your back and something going on with your tongue. I guess I’d check with your doctor for those?
I don’t have those symptoms.