I was diagnosed with with
Igm Mgus in May 2023. In Dec 2023 I experienced pin, needles, tingling in my toes and told my hematologist. She referred me to a neurologist who did nerve conduction and EMG and said I have sensory neuropathy and that I needed to be clinically tested by hematologist. The hematologist said she “didn’t think” the neuropathy was related to the Igm mgus.
I saw a different neurologist in 2025 who sent me for cervical and lumbar MRI. I asked him to do an anti mag blood test. The result: anti mag titers 102,400 = “extremely high”
He referred me to another hematologist who did numerous blood tests and bone marrow biopsy in Nov 2025 and diagnosed Igm mgus anti mag neuropathy. ( now up to knees and finger tips) Neurologist did nerve conduction and emg in Jan 2026
Results did not show neuropathy? but I know my symptoms- all the usual pins needles burning pain and balance etc. Labs and hematologist say anti mag peripheral neuropathy diagnosis. Neurologist and hematologist don’t recommend Rituximab.
Given the high titers they suggest a clinical trial but I’m not interested in that
So: it’s a rare disease and many neurologists and hematologists have no experience with it. My first hematologist and neurologist missed it so my thoughts/suggestions are for those with Igm mgus and neuropathy to find Doctors with experience with anti mag neuropathy. Mayo clinic or Dana Farber should be able to recommend some