Hello,
I’ve just joined this forum because I’m looking for other people around the world who have been diagnosed with Anti-MAG Neuropathy.
I don’t know anyone else with this condition where I live in Australia, though I’m sure they exist, even if it is a rare disorder.
If you’d like to share your story with me, particularly about what has helped you improve and/or live with the symptoms of Anti-MAG, I would love to hear from you.
I was diagnosed 18 months ago, but have probably had it for over 10 years , firstly in a mild form, and originally diagnosed as neuropathy from a possible pinched spinal nerve. My symptoms accelerated about 3 years ago and I sought a re-diagnosis nearly 2 years ago. Since the diagnosis of Anti-MAG Neuropathy (my titre = >70,000) with IgM monoclonal gammopathy , I have been treated with Rituximab every 3 weeks x8, but it had no apparent effect. Three months after that I was started on IVIg Privigen 50g every 4 weeks. I have been on IVIg now for 9 months. After the first 2 treatments of IVIg, I noticed a significant improvement in symptoms and was able to start walking without the aid of a stick. Since then, my neuropathic symptoms have plateaued. They are no better, but also no worse. Fatigue and temperature control are still a huge problem though.
So.....are any of you who used to chat on this thread still out there? Or anyone else new to this forum?