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Anti-mag neuropathy
Long standing mild sensory idiopathic peripheral neuropathy. Things changed rather quickly. In retrospect maybe not so quick. In any event, now anti-mag neuropathy. I know it’s kinda rare and just interested in knowing if others are out there.
Fsr
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Hi, Yes I have antiMAG neuropathy. They tell me that a blood disorder is the cause of my PN. My antiMAG test came back off the charts! I am trying to comprehend whether the treatments for this disease is better or worse than having the disease. Did they tell you you have MGUS with Neuro implications or something else?
Thanks for response. Told me mgus with anti-mag neuropathy.
@fsr
Hello
Did doctors recommend any treatment?
Rubituximab??
It is such a rare condition.
Hopefully someone who has been treated will give some insight as to their experience.
@positivehea
Thank-you for response. Yes. In looking at published results and the real concerns associated with taking this, it’s not on my wanna do list.
F
@fsr
Thank you.
Definitely real concerns!
Thank-you for the info.
F
@fsr, you may also be interested in these related discussions:
- Is anyone suffering with Anti MAG neuropathy? https://connect.mayoclinic.org/discussion/is-anyone-suffering-with-anti-mag-neuropathy/
- Anyone with Anti-Mag tried Rituximab treatment https://connect.mayoclinic.org/discussion/anyone-with-anti-mag-tried-rituximab-treatment/
- DADS-M Neuropathy with Anti-Mag Antibodies...anybody else? https://connect.mayoclinic.org/discussion/dads-m-neuropathy-with-anti-mag-antibodies-anybody-else/
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1 ReactionI 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
@3charlie