Medicare/Medicaid
 

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.

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Thank you.

IRootForMapleLeafs,

Have you had a diagnosis? To learn what coverage you have under Medicare and Medicaid I'd think you need to have the disease or condition identified. A BMB (bone marrow biopsy) is a diagnostic procedure, not a treatment, and may be necessary to diagnose what's wrong.

Both the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins University and the Duke Comprehensive Cancer Center at Duke University are excellent treatment centers. Both have been designated as Comprehensive Cancer Centers by the National Cancer Institute and both have been designated as MDS Center of Excellence by The MDS Foundation. You won't go wrong with either one if you have a bone marrow failure disease.

Are you over the age of 62? Is that why you are on Medicare or is it because of your health condition? I would meet with a doctor and specialist and make your choices once you know the options.

I know I'm late to this but can I ask a few questions?

Are you on Medicaid or Medicare? We were told my husband wouldn't qualify for Medicare unless disabled for over 2 years. He was on Medicaid briefly and we didn't have any problems getting his care covered. A few times things had to be preauth-ed but that's true with any insurance.