@A MyMyelomaTeam Member, you need to change doctors! The only way to stage MM is with a bone marrow biopsy. You can't go by M-spike. My M-spike never changed and my first oncologist wouldn't do a biopsy. I kept getting more symptoms and he said "I don't know what is wrong with you but it isn't MM". When I switched oncologists, he did a BMB and it was MM.

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A MyMyelo...

Hello @A MyMyelomaTeam Member ! I am experiencing the same thing and have the same question that I posted previously on here. I have had/am having symptoms and conditions related to MM, but doctors and others say MGUS is asymptomatic.

Just three examples out of many...I have increasing back, rib, and arm pain that cannot be explained, doctor just says musculoskeletal. I had an unprovoked DVT (deep vein thrombosis) and subsequent bilateral PE (pulmonary emboli) that I was blessed to survive, none of my doctors think it's related. I was very anemic (again, I have a lifelong history), requiring iron infusions because supplements didn't work.

They've not even suggested getting a bone marrow biopsy, I just do labs every 6 months and they tell me to let them do the worrying. All fine and good, I just would like to have a baseline bone marrow biopsy and perhaps a CT or PET scan for my bone pain, to hopefully rule out anything. Then I would be satisfied and carry on.

I am sorry you re having symptoms and I hope you get some relief and answers soon! 🕊️🙏❤️🕯️

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A MyMyelo...

Thank you so much for your reply @A MyMyelomaTeam Member , I'm just now seeing it over a month later! I don't know why I miss notifications on this site, still having a little trouble navigating.

I'm in the process of (possibly) seeing someone else, it all depends on my upcoming lab results and visit with my current oncologist. If they still do not suggest a bone marrow biopsy, I'm going elsewhere.

I think the confusion also lies in the fact I was diagnosed with MGUS via the Promise Study, https://www.enroll.promisestudy.org/ , and not by my local PCP or oncologist/hematologist I was already seeing for my chronic anemia. And possibly the fact they are going by my lab levels only, and the fact that they don't treat many MM patients at their facility.

It's all very frustrating and confusing, it certainly pays for us to be our own advocates in our health care!

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A MyMyelo...

Home | United States | PROMISE Study: Researching Multiple Myeloma

https://www.enroll.promisestudy.org/

Health Care is the most corrupt business in the world. Money is made from treatments.......not cures. Sad but true.