Hi everyone,

I am so glad I have found this website as I feel like the only one suffering from this disease.

I was diagnosed about a year ago. I was treated with IvIg but became allergic to it and my hands started to peel, with treatment they got better but not back to normal. Six weeks later I had plasma exchange which was a five day course and felt 75% better but again this didn't last for long, approximately eight weeks.

I have since deteriorated and have very sore fingertips and toes and very poor walking ability and balance. I went to see my consultant and asked him to explain in layman terms what was happening and he printed off a page from Wikipedia and just said I will give you more information when you come into hospital. I am waiting for the phone to ring to say to come in and have Rituximab.

I will keep you up-dated .Thanks for listening
Martin