Does anyone else have MGUS?

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?

@spmreads1
Welcome to Mayo Clinic Connect. Cyroglobulenmia was new to me so I had to check it out. Like many other Members with MGUS, I also have Peripheral neuropathy. None of the accompanying symptoms such as rash. It sounds as though cyroglobulenmia is very rare.
Are you seeing a neurologist next go around or have you been referred to a hematologist/oncologist?

@spmreads1
PS…it’s maddening to me when a physician says, “it’s probably (fill in the blanks)” when diagnostic requirements have not yet been completed. Try to keep your anxiety in check as it will make you feel sick! Been there.

I am having a PET scan next Friday as part of my diagnosis. My primary symptom is peripheral neuropathy and a rash that comes and goes. I originally went to the doctor for the neuropathy and MGUS showed up in blood work. Doctor is saying the neuropathy is “probably” being caused by MGUS cyroglobulenmia.

How are you/ have you being treated for MGUS and/or the associated neuropathy?

I have seen a rheumatologist, neurologist, dermatologist, and now a hematologist. There are far too many ‘ologists’ in my life right now. Where is you peripheral neuropathy showing up? Mine is complete numbness of my left foot and partial numbness in my right. I originally went to my GP bc the numbness in my left foot was getting worse and moving up my shin. Then irregularities showed up
in my bloodwork and 4 doctors later, here I am.

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!