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Anti-mag neuropathy

Posted by fsr @fsr, Mar 24 12:16am

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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fsr | @fsr | Mar 30 7:59am

Thank-you for sharing. Curious, did the pins and needles, numbness in your feet come and go or was it constant.

F

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fsr | @fsr | Mar 30 8:02am

Thank-you for sharing. Curious, did the pins and needles, numbness in feet come and go or was it constant?
F

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3charlie | @3charlie | Mar 31 6:04am
In reply to @fsr "Thank-you for sharing. Curious, did the pins and needles, numbness in your feet come and go..." + (show)
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Thank-you for sharing. Curious, did the pins and needles, numbness in your feet come and go or was it constant.

F

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@fsr fairly constant but varies in intensity.
Sometimes i barely notice it, other times it’s quite painful.

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fsr | @fsr | Mar 31 7:17am
In reply to @3charlie "@fsr fairly constant but varies in intensity. Sometimes i barely notice it, other times it’s quite..." + (show)
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@fsr fairly constant but varies in intensity.
Sometimes i barely notice it, other times it’s quite painful.

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@3charlie
Again, thank-you for sharing. This is new to me. :(. When you say painful, what do you mean? Have you lost any strength?

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3charlie | @3charlie | Mar 31 1:05pm
In reply to @fsr "@3charlie Again, thank-you for sharing. This is new to me. :(. When you say painful, what..." + (show)
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@3charlie
Again, thank-you for sharing. This is new to me. :(. When you say painful, what do you mean? Have you lost any strength?

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@fsr By pain I mean intense sensory type pain. Burning. Pins and needles,
Numbness etc in feet making it very hard to walk very far. I haven’t any weakness though.
No fun, but there are a great many things worse at my age 78

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fsr | @fsr | Apr 7 7:48am
In reply to @3charlie "I was diagnosed with with Igm Mgus in May 2023. In Dec 2023 I experienced pin,..." + (show)
Profile picture for 3charlie @3charlie

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

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@3charlie
C,
Thks for sharing. You mentioned a clinical trial. Would you mine sharing more? I too have anti-mag. Mild for 8 yrs in feet. Now getting much worse.

F

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3charlie | @3charlie | Apr 7 4:06pm
In reply to @fsr "@3charlie C, Thks for sharing. You mentioned a clinical trial. Would you mine sharing more? I..." + (show)
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@3charlie
C,
Thks for sharing. You mentioned a clinical trial. Would you mine sharing more? I too have anti-mag. Mild for 8 yrs in feet. Now getting much worse.

F

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@fsr
Clinical trial at Johns Hopkins. I think it’s called the Imagine trial. Look up the Foundation for Peripheral Neuropathy website for info.

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mamacwb | @mamacwb | Aug 3 11:20am

Anti mag sufferer here. My leg pain is much worse at night, but not every night, it seems to be worse after days of walking or standing or sitting all day reading a good book! Any one else have this issue and what helps?

Carol

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