Welcome @mamacwb, You will notice that we merged your discussion with another one on the same topic so that you could connect with other members like @mkbs, @wcooke, @pammy1, @framboise1 and others. If you click the link below, it will take you to the beginning of the discussion where you can learn what other members have shared.

-- Is anyone suffering with Anti MAG neuropathy?: https://connect.mayoclinic.org/discussion/is-anyone-suffering-with-anti-mag-neuropathy/

You might also find this webinar posted earlier in the discussion from the Foundation for Peripheral Neuropathy helpful for learning more about the condition and treatments.
-- FPN Webinar: Anti MAG Peripheral Neuropathy: An Overview with Dr Richard Lewis, MD: https://www.youtube.com/watch

Has your care team or doctors offered any suggestions to help with the pain you are having?

@mamacwb I have had anti-mag pn since 1991 and have not found an effective treatment for the disease. My neurologist recently prescribed Vyvgart which I understand is FDA approved for CIDP. Protocol is one injection of the stuff every week for four weeks. My last shot will be next Tuesday. So far, I have not noticed any change in pain level. Recently, I found medical articles that, as best as I can understand them, say that there is anecdotal evidence that there have been a few cases where treatment using BTK inhibitor therapy (ibrutinib, zanubrutinib, or acalabrutinib) has produced some pain relief caused by anti-mag pn. BTK inhibitors, however, are not FDA approved for anti-mag pn and the use of the drug for anti-mag pn is definitely an off-label use. For pain, I take the daily maximum dosage of gabapentin and tramadol. However, these drugs only take the edge off of the foot pain. Good luck. Walter Cooke