Originally Posted by RoyC

Hi Everyone
I started having symptoms two years ago with the usual pins and needles in my feet. My gp put me on b12 and folic acid but the symptoms gradually worsened. He then sent me for a bone marrow bio and referred me to a neuro in Nanaimo who did some sort of nerve conduction testing which Im sure you all are familiar with. The neuro then had me to one course of ivig (4days) but there was no improvement so he then decided on a spinal tap. It was after this that he dx me with anti-mag. Admittedly not very knowledgeable with this variant he sent to Vancouver to see someone more familiar with it.
After her evaluation she told me what I needed was Rituxamab but unfortunately funding was difficult to get. To shorten the story, six months later after seeing two other hematologist I have been startedand feel very fat on 50mg prednisole plus I'm going for another course of ivig along with starting six months of cyclophosphamide (100 mg) daily.
At the present time the numbness has crept up to just below my knees,
the soles of my feet burn after walking for five minutes, I have lost more than20 lbs of fat and muscle tissue and hands just recently started to tingle.
I can't do more than ten minutes of yard work because of weakness in my lower legs and I feel extremely fatigued.
My gp told me after my dx that the progression would be slow (years) but I feel my progression seems somewhat faster than most. I would appreciated any comment and would be interested in knowing how others are managing.

Cheers!