Originally Posted by Mel2014

Hi NancyKay and Everyone on this thread,
My names Mel, I am a 54yr British woman living in The Netherlands and I was diagnosed with Anti-MAG in April 2014. I found this thread when I was first told they suspected I had Anti-MAG and I read all the posts. There is so little information and almost no help/support that I am also very happy to have found this thread.

I started getting a vibrating sensation in my left leg nearly two years ago and before that I'd had other symptoms that I had no idea were related, like very bad itchy legs and cramps in my left foot. I went to the doctor who sent me to hospital for nerve and vein tests in January 2013 but they found nothing and sent me away.

In August 2014 I had Bi Lateral Pulmonary Embolisms and was in hospital for a week. When they were looking for a cause they found MGUS IgM in my blood and then later the Anti-MAG. There is very little they can do and the only drugs/treatments are not proven to be very effective and have bad side effects.

My symptoms have become worse and I have vibrating sensations in both legs now and my hands have sensations, tremors and weakness.

I'm very scared although I do my best not to think about it too much and try to stay positive. I'm not working and I spend most of my time teaching myself to paint which was something I was doing before I was diagnosed. I also am trying out techniques to make it easier for me to be able to continue to paint as my condition gets worse.

Anyway, that's me saying hello and filling you in with a simplified version of my story. Anyone else have hobbies? Anyone know of any new studies into Anti-MAG PN?
Cheers Mel