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.

I have MGUS, diagnosed about 4 years ago, now I have also been diagnosed with Amyloidosis. I wonder how strong that relationship is and what to expect going forward.

I was diagnosed with MGUS about 4.5 years ago and now I have been Diagnosed with Amyloidosis. The doctor has full blood work done every 3 months and with my new issue with Amyloidosis, I have had my second bone marrow biopsy. With just the MGUS he just has basically continued to watch the blood results. The IGM levels are over 4000 (top of normal range is 143), but he feels this isn’t much of a problem yet. Don’t know how other doctors have treated it, but for the most part mine has chosen to continue to watch it. It may change now with the Amyloidosis, but not sure since that is new. Understand that only 1 or 2% chance of changing to Myeloma each year. Best thing is to educate yourself as much as possible and ask good questions when you visit your doctor. I’m certainly not an expert, but the key is continue going forward. I don’t know at what point we should seek a second opinion.

I agree
I was diagnosed several years ago also with MGUS and have been under the care of an oncologist hematologist
Test for amyloidosis was neg, and every 6 mos I go for bloodwork, and yearly a skeletal X-ray to check for bone tumors.
My results have been good, labs good also.
I too know little about MGUS, and don’t get much info from the doc.
All she says is we just have to assess my labs every 6 mos

No pet scan but yearly I get a skeletal survey to check my bones for tumors
Besides that, in the past my lumbar puncture showed that I had 4x the amount of protein in my spinal fluid, and I also always have abnormal C Reactive protein in my blood.
Asked the Neuro doc what that meant and he said it means you’re sick but you don’t appear to be
Can not get straight answer from any of the several neurologists that I’ve been to the past 10 yrs.
Very frustrating

Sounds like our treatments for MGUS are very similar. I watch the IGM levels increase to very high levels but they continue to tell me it’s ok. They primarily rely on marrow biopsies to tell them if it’s changing.
Now I have been diagnosed with Amyloidosis, which appears to be somewhat associated with the MGUS but not frequently, so it may start a new path for me.
I hope you continue to do ok. Keep looking at sites like the Mayo Clinic, they seem to have the better information on MGUS and associated conditions!