Is anyone suffering with Anti MAG neuropathy?

@colleenyoung he started in in August and is happy with his improvement

Hello @pammy1, I would like to add my welcome to Connect along with @framboise1 and others. I thought you might find this webinar from the Foundation for Peripheral Neuropathy helpful for learning more about the condition.
-- FPN Webinar: Anti MAG Peripheral Neuropathy: An Overview with Dr Richard Lewis, MD: https://www.youtube.com/watch

Do you mind sharing what symptoms you are having?

I was diagnosed with anti mag in 1991. No treatment for the disease worked. I have been on gabapentin and tramadol for pain for many years. Good luck.

Hi, I was diagnosed with anti MAG neuropathy over two years ago. Had neuropathy from chemo received 20 years ago but had new symptoms on top of my feet and going up my shins as well as some fingertip involvement which got dx'd as antiMAG. No treatment to date other than low dose gabepentin but titres keep doubling. Glad I found this group. Have connected with most of the sites referenced by John and Steve but will look at Youtube video now too. BTW am retired banker now doing tai chi, pottery, bookclubs and socializing and enjoying family. Maria

Greetings fellow sufferers! I am a 76 year old woman diagnosed last March. My insurance has denied Retuximab so I am getting ivig but I am not sure it is helping much. Today my legs ache badly, I have a toe pain plus other aches and pains. I am using acetaminophen, about 6 in 24 hours, and it isn't helping much. Any advice? I see some of you have oncologists as well as neurologists, is this an avenue I should pursue?

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?

Welcome Maria @mkbs, Sorry to hear you were diagnosed with Anti Mag neuropathy after having chemo-induced neuropathy. I think it's great that you are learning as much as you can about the condition and the treatments that help. It sounds like your have some good suggestions to help with living better with the condition. If you haven't used the search function here on Connect it is a great tool for finding other discussions and members with similar symptoms to learn what they have shared.

Have you tried the search function yet?

@johnbishop My neuro has just upped my lyrica, it's my balance that has me worried. I am getting PT for that. Should I have a hematologist as well as a neurologist?

@mamacwb PT has helped my balance some. I do think it can help . I’m not qualified to say whether or not you should see a hematologist but it would be a great question to ask your doctor or neurologist.

@johnbishop saw my oncologist yesterday, I am a lung cancer patient, and she is referring me to a hematologist. Like most practitioners, she was not familiar with anti Mag and did a lot of research after my last appointment. I am in physical therapy for balance and I think it is helping