Hi Linda,

I was diagnosed with Madsam 13 years ago and have been treated with Immunoglobulin ever since and that had kept the progression at bay.

I can still run half marathons and continue a normal life, from what you have written I don't think your diagnosis is correct and would seek another opinion.

I do believe that the professor who diagnosed my condition in London was correct and that my treatment is also appropriate.

Not sure I have been any help to you, but I wish you the very best