Does anyone else have MGUS?

@gingerw and @pmm
I will keep you posted. Thanks for letting me vent and for the support. These posts have kept me sane.

That's so kind of you. Thank you so much.

I’m waiting for the official diagnosis of MGUS or something else. I fell while standing beside someone with whom I was having a lovely conversation. I wasn’t injured, but I checked my blood pressure and discovered it was high for me. So I called to see if my GP wanted to see me, but she booked. She referred me to a brand new doctor who was extremely thorough in his examination, conferencing, and in the number of in-depth tests that he ordered. After all of that, I expected a follow up visit, but instead, I got a phone call from a nurse who said, “all of your tests are fine, but you do have too much protein in your blood so we’re sending you to a hematologist. Is that okay with you?” That’s it! Long story, short…the hematologist had done an in-depth look at my prior records and congratulated me on having such a thorough doctor. He felt that I probably had MGUS but he would have to do some other tests to make that determination. I wish that I had been better informed before seeing him. I had no idea how to prepare for that first visit. However, this is where I am right now: I have had lots of bloodwork done, a full body x-ray, 24 hour urine test, and a bone marrow biopsy completed. The doctor’s nurse has called me after every test to tell me everything is “fine” except for the bone marrow biopsy indicated that my M spike was 10%, so he recommended that I have a PET scan to “get the whole picture.”

I’m concerned about that test and I’m hoping it truly is simply for the purpose of completing the “whole picture,” and not because it’s something else.

Have any of you had a PET Scan as part of your MGUS diagnosis?

Hello:
I also have had MGUS for several years, and had a full work up initially to get a baseline, and to make sure nothing concerning was going on. The PET scan is to see if there are lesions in your bones, which would be important to know. All being thorough, which is a +.

To clarify- do you mean you have 10% monoclonal plasma cells in your bone marrow?
What is the amount of the monoclonal protein spike ? It’s usually in grams/dl.
There are several tests that will be followed and the doctor should review everything for you.

Yes, I have 10% monoclonal plasma cells in my bone marrow. Sorry for the confusion.