Hi other people with MGUS...
I just learned this week that I have MGUS, but only after 8 months of tests of all sorts to determine why I have peripheral neuropathy. At first my fears were the worst, so the diagnosis of MGUS was a bit of a relief. Nevertheless, knowig that there is a conversion rate of 1% per year to cancer (multiple myeloma) does not help.
I am a runner...or should I say...was a runner until my feet went numb from this MGUS. I have done a lot of research and found that people with IgM - MGUS are more likely to have peripheral neuropathy than those with IgG. Because of the numbness and loss of balance, etc, the doctors have prescribed medication called RITUXAN, which just happens to be very expensive. But the main thing is to try to stop the progression of the numbness which has now climbed to just below my knees. It is accompanied by weakness so I have difficulty walking at the same pace as others. All of this is very depressing after running many marathons and trying to stay healthy for the last 30 years.
I was wondering if there are others in this chat group who have either the IgM type MGUS or who have peripheral neuropathy?
Like many of you posted, I had never heard of MGUS until this week. While others say I should be elated that I don't have something like ALS or MM, I am still very concerned about the possibility of it changing to cancer.
Good luck everyone.