Does anyone else have MGUS?

@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.

@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?

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.

Hi my name is Debs I have M Gus I have high level in my blood like you you I feel a bit in the dark Recently I keep getting bouts of sickness and I’m constantly feeling tired my body hurts and my legs the pain in the thighs is unbearable my doctor says it’s my arthritis How you feeling

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!

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

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

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 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.

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