[IRootForMapleLeafs]

Hello new friends-

I am also one who has a slow moving disease......seems to have been triggered by pregnancy. They are thinking auto immune. Platelets were frist to go- but they were going down very slowly, then white blood cells, neutropenia, and slight RBC.

I had a terrible episode 2 years ago but it seemed to resolve to where I am OK but they are watching.

Here is my question. I had to go onto Disability for a different reason. I was forced to take Medicare per law. Because by law Medicare had to come first, I had to let my private insurance go. It was expensive. However, I am concerned now lest this progress. My other insurance was quite good. But impossible to keep them both up and eat, too.

Now I am on Medicare and Medicaid.

I have refused treatment such as the BMB because I cannot take the first line treatment is seems is always Medicare's first and that is steroids.

I am aware that I am rolling the dice, but if anyone has GOOD stories about Medicare treatment please post them.

I would go to Johns Hopkins or Duke if this progresses. I live fairly close to NC and could go to Duke much more easily but I hear that Hopkins is the best on marrow issues.

If anyone can comment, I would be grateful. I will also post some other questions.