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DADS-M Neuropathy with Anti-Mag Antibodies...anybody else?

Posted by savomic @savomic, Nov 28, 2022

After 4 years of lower limbs weakness, I was recently diagnosed with Distal Acquired Demyelinating Symmetric with the M protein and tested positive for Anti-Mag Antibodies. Pin and needles in feet and lower limbs, ataxia, weak ankles, and tremor up to my hips. Difficulty walking and balance issues. Originally treated with IVIG with no results. Started Rituximab treatment every 3 months. Anybody else with similar issues?

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sowers11 | @sowers11 | Oct 17 1:08pm

Appreciate the input. I'm just starting on this strange trip which seems to inhabit a very small corner of the neurological issues field. I'm curious if you are getting help from a Neurologist or a Hematologist? It seems both suggest the other will determine a treatment plan. So far have pain in both feet, now tingling and pain starting in both hands. Gabapentin seems to take the edge off but is not a solution, even at high doses.

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1 reply
harley22 | @harley22 | Oct 17 2:40pm

How did the Rituximab work for you?

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natelew | @natelew | Oct 18 2:04pm
In reply to @sowers11 "Appreciate the input. I'm just starting on this strange trip which seems to inhabit a very..." + (show)
@sowers11

Appreciate the input. I'm just starting on this strange trip which seems to inhabit a very small corner of the neurological issues field. I'm curious if you are getting help from a Neurologist or a Hematologist? It seems both suggest the other will determine a treatment plan. So far have pain in both feet, now tingling and pain starting in both hands. Gabapentin seems to take the edge off but is not a solution, even at high doses.

Jump to this post

I think we are in the same boat without a paddle. My neurologist placed my PROBLEM in the hands of my Hematologist. As I haven’t officially been diagnosed with anything as of yet. But with the tingling in my hands and feet, and my feet feels cold to me but not to the touch. Is a test really worth it, but of course Doctors can not diagnose without a scan or blood test.

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1 reply
artemis1886 | @artemis1886 | Oct 19 6:02am

Each IVIG works differently. I started panzyga for five days every three months. Within the first five days my balance, dizziness and my left leg quit dragging. I am curious what the next infusion does in December. Mine is autoimmune.

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artemis1886 | @artemis1886 | Oct 19 6:04am
In reply to @natelew "I think we are in the same boat without a paddle. My neurologist placed my PROBLEM..." + (show)
@natelew

I think we are in the same boat without a paddle. My neurologist placed my PROBLEM in the hands of my Hematologist. As I haven’t officially been diagnosed with anything as of yet. But with the tingling in my hands and feet, and my feet feels cold to me but not to the touch. Is a test really worth it, but of course Doctors can not diagnose without a scan or blood test.

Jump to this post

The neurologist did not do a small fiber biopsy or emg/nerve conduction test?

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