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Is anyone suffering with Anti MAG neuropathy?
Autoimmune Diseases | Last Active: 2 days ago | Replies (34)Comment receiving replies
@mphaddican Unfortunately, I do not have any suggestions for your husband. But who was his doctor at Dana Farber? I suffer from anti-mag pn and Waldenstrom's and am trying to get an appointment at Dana Farber. These diseases are so rare and unusual that I have found it very difficult to find doctors who are knowledgeable about these afflictions. Thanks in advance. Walter Cooke
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@wcooke
Walter,
Thanks for your response.
My husband went to Dana Farber in 2020 and had a bone marrow test and lots of vials of blood were taken. They found he had the CXCR 4 mutation which 40% of people with WM have so his infusions were adjusted for that difference.
We were able to come back home, New Orleans, for the treatment. Dana Farber group prepared the medication and Ochsner administered it.
There is a specialist at Mayo who deals with WM. We have to look him up again but I am sure someone there can give you his name.
If I find it will send. He deals in research I think.
The physician at Dana Farber is Jorge
Castillo.
Hope you connect with someone. My husband’s IGM score has been normal after the treatment. Hopeful!
Just Neuropothy still dealing with.
Marylyn