Off and On IVIG

March 28, 2011 at 11:57 pm

Hi Nancy,

Like you, I began IVIG last summer shortly after being diagnosed. My symptoms are mostly sensory, but have had some balance problems as well.. I developed some eye problems in December so the Neuro decided to take me off of it to see if my eyes improved. The eye problem resolved and the eye doctor decided that the IVIG probably did not cause it, but did not offer a reason why it (optic nerve enlargement and retinal hemmorhage) happened. Went to back my Neuro for regular appointment a week ago and found that I had really started to decline in muscle strength and nerve conduction. It happened so slowly that I did not realize it. He suggested that I restart IVIG 100 G every four weeks. I do not take any other meds for neurological problems. Three days after receiving the iVIG I am feeling better. I was doubting the need for IVIG, but now I have experienced the difference. Unfortunately, the stuff is expensive, but I am lucky to have decent insurance which covers most of the cost.