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Anyone live in Maryland w EDS?

Bones, Joints & Muscles | Last Active: Aug 6 4:25pm | Replies (22)

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Profile picture for mmmerrimac @mmmerrimac

@ngk1 Thanks! I'll check out MUSC in Charleston too. I have difficulty standing and walking, so traveling is problematic for me, but I may have to do it to get answers.

I'm sorry you're unable to get the osteoporosis meds you want. I find that the problems with Medicare coverage so often are with the private insurance aspects of it, such as the Medicare Part D, Medigap, or Medicare Advantage policies. I have original Medicare A and B, but I accidentally lost my supplementary/Medigap coverage last fall (brain fog). By the time I realized it, I was past the grace period and couldn't get it reinstated without going through underwriting. With all my health problems, I can't get underwritten—period. Yep, pre-existing conditions are still a thing. I don't want to go with a Medicare Advantage plan (again, private insurance) because of limited access to specialists and need for prior approval. Because of some expensive tests (e.g., heart catheterization), my 20% copays are killing me.

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Replies to "@ngk1 Thanks! I'll check out MUSC in Charleston too. I have difficulty standing and walking, so..."

@mmmerrimac so sorry to hear that. I went back to Evenity as it is covered by Medicare Part B since it is considered an infusion. Sorry to hear you lost your Medigap. That has to be so frustrating. I understand how it works with private insurance. I used to work in managed care on the hospital side. I think it was a surgeon or two who decided to create the clinic at MUSC but unfortunately I don't remember much else.

@mmmerrimac I forgot about Mayo in Jacksonville! See the comments below about Mayo Clinic in Jacksonville. It was out of network for our son.