Anti-MAG peripheral neuropathy

[Karjade]

Has anybody been diagnosed with Anti-MAG peripheral neuropathy. It is very rare and I feel so alone. I live in the U.K.

[orange33]

hi karjade unfortunately I also have this dreadful condition as well as RA. It has changed my life .

Diagnosed about 7ys ago. I’m sure there must be many like us..

[Karjade in reply to orange33]

hi Orange33. Thank you for replying. I am just coming up against a brick wall with everyone as nobody has heard of Anti-MAG peripheral neuropathy and I have no help. I have found this very small group in France on Facebook and they have helped me to understand more. They keep telling me that I must get an appointment with a Haematologist to keep a check on my blood test results and I was wondering if have you been referred to one. I asked my doctor and he refused to refer me! I have been to a hospital who are supposed to specialise in neuropathy where I was diagnosed but I have seen two Neurologists and now I have been given an appointment to see a third Nerve/Neurologist but not until October! In the meantime I am in so much pain and not coping well at all and it does not help that my own doctor has turned his back on me now! Sorry to offload but I am so desperate now xx

[orange33 in reply to Karjade]

hi hello I’m so sorry to hear that you are in so much pain. I do understand completely your frustration not getting much help with this horrible condition. I have seen neurologist and I did have a blood test. There was something in my blood about a protein I really don’t still don’t understand much about this condition. However I had three rounds of rituximab..

I wish I could say that stopped this condition. My GP and my rheumatologist didn’t seem to understand much about this condition which didn’t help me of course. Unfortunately, it has affected my hands and my feet and I am in pain many times. This condition has changed my life. I do hope you can find some comfort with the people you communicate with in France.

I have yet to meet somebody that actually has the same condition as me face-to-face.

[Henk6]

have you tried YouTube search for Neuropathy and intermittent fasting ?