[Lou Venema]

Once t he approval was done I had on treatment of 500ml. That worked well. I was then moved up to 3 times every four weeks.About a year ago it was increased to every 3 weeks.

Sometimes I have a slight discomfort, much like a sugar drop. I think it is mostly tension. A protein bar fixes it right up.

[Lou Venema]

I had my diagnosis and confirmation in less than a month. My optometrist checked my double vision in my left eye and sent me to a nuer-opthamologist. He performed several tests and referred me for a blood test. It came back positive. That had me very concerned for a while as I had just left a where where I was destroying nerve agent and took the same test every year. The work tests were only to verify my initial Ach levels and then compare them every year. There was only slight changes in 6 years.

I went to my neurologist, he confirmed the test results. My VA PCP referred me to thier neurology. Then I was referred to Indiana University to their head neurologist. We had quite a discussion about what had been happening at the VA, results of their treatments and results and help the VA team change my treatment outlook.

I bounced around a bit at the VA but after 6 months I was assigned to a permanent care taker, I get a new one every three years as the cycle of students come over from IU. My supervising neurologist was changed by a fluke in t he scheduling. I found the new one was from the hospital and medical center where I have normal care. My neurologist there and my PC doctor both new him well and that helped a lot.

It took about a year to get my IVIG started. So far, it is the only medication that has had any long term response. Occasionally I have a bad day and I take 1 or 2 Mestinon. That helps but that is about all I dare take.

That may seem like a long time for treatment but it is pretty fast in VA time. Once it was determined to use IVIG things happened quickly. There was no time lost for approvals like some people have with their insurance.

Best wishes to all, I hope you treatment works well for you.