Does anyone else have MGUS?
I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?
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These “ologists“ do control our lives. Do they not? I have neuropathy, which is mostly the bottom of both feet. It causes me to be a little wobbly and it’s painful. It has not progressed since it started about four years ago. It really predated my diagnosis.
@spmreads1
My MGUS blood analysis has been very stable since I was diagnosed three years ago. I had quarterly blood draws for the first two years along with semiannual scans. Last year we went to every 6 months for draws and scans. So we hold steady.
I’ve been waiting to see a neurologist for over a year now. I guess I’m going to have to go outside of my provider group.
The PET scan didn’t “light up” any place except in my hiatal hernia, which is good news. He will check my bloodwork every three month monitoring it for any change. He summed it up by saying that I was at the lower end of low risk for my developing Multiple Myeloma. I’m seeing a GI to have the hiatal hernia checked out, but he’s not concerned that it’s anything to be concerned about. So all in all, I am at peace with the plan he’s put into place and go on with life as it is. I hope all of you remain well!
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.
@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!