Is anyone suffering with Anti MAG neuropathy?

@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

@mphaddican Thanks for the information. I have tried to get treatment at the Mayo Clinic, but without success. Walter Cooke

@wcooke

Dana Farber ( Boston) They probably can tell you the Doctor to contact at Mayo for WM. I don’t know how my husband got his appointment at Dana Farber but he did research and got the appointment.
I met Dr Castillo at Dana Farber and he explains everything in layman’s terms. No guarantee but hopeful.

Dana Farber
New Patient Appointments
877-442-3324
REQUEST AN APPOINTMENT
Expert Care and Treatment for Waldenström's Macroglobulinemia

@mphaddican
FACULTY Dana Farber
STEPHEN M. ANSELL, M.D., PH.D.

Location. Mayo Clinic
Rochester, Minnesota
Contact
ansell.stephen@mayo.edu
Clinical Profile
SUMMARY

Stephen M. Ansell, M.D., Ph.D., is a hematologist and oncologist who also conducts cancer research. Dr. Ansell studies the biology of B cell cancers, including Hodgkin's lymphoma, Waldenstrom macroglobulinemia and non-Hodgkin's lymphoma. Dr. Ansell also investigates the role of the tumor microenvironment in supporting cancer cell growth and survival.

You might ask this physician for advice. I am familiar with his name.
Good Luck!
Marylyn

Thanks to all very much for sharing. I’ve had numb feet ( moderate) for 8 yrs. Most recently not so moderate and going up shins. Had albumin in cns 8 yrs ago and thought maybe sensory CIDP. Now blood work shows anti-mag. Calf’s starting to bother me and tingleys starting to go wild. Finding it difficult to get into a neurologist with anti-mag experience. From all that I’ve read doesn’t appear to be a good treatment. Has anyone found anything that works?

Frank

@fsr what is anti-mag??????

Thanks to all very much for sharing. I’ve had numb feet ( moderate) for 8 yrs. Most recently not so moderate and going up shins. Had albumin in cns 8 yrs ago and thought maybe sensory CIDP. Now blood work shows anti-mag. Calf’s starting to bother me and tingleys starting to go wild. Finding it difficult to get into a neurologist with anti-mag experience. From all that I’ve read doesn’t appear to be a good treatment. Has anyone found anything that works?

Frank

@fsr Good morning Frank
I also have anti mag and see a neurologist who has had a little experience with it. A friend who is a neurologist recommended that I see a neuromuscular specialist but I have not yet. Because we are so rare, there isn't a lot known or studied about the disease. There is an international study occurring at multiple locations in the US and abroad. It is called Imagine https://www.foundationforpn.org/imagine-study/
and is through the Foundation for Peripheral Neuropathy. Hopefully we can find relief sooner rather than later. Hang in there you are not alone
Carol

@mamacwb
Thank-you Carol very much!
I went to that site and read same. I didn’t find anything (Unless I missed it) that reflected any type of treatment that seems to work. Did I miss anything? If you don’t mind me asking, have you tried any treatments? Thks again for reaching out and please contact me anytime.

F