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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: Sep 10 12:05pm | Replies (1906)Comment receiving replies
Hi, John. Boy, this just gets worse and worse. 'Spent the last 3 hours on the phone with my insurance and doctors, including speaking to Mayo here in Florida. I was told that I can't get a referral to Mayo because my GP has never heard of PMR and doesn't think it's a thing. I talked to Mayo, 'said I was willing to pay out of pocket and they told me I'd need a $5000 deposit. When I said I'd raise the cash to just pay out of pocket before I become permanently disabled, the they said "Oooh! Right. Yeah we can't actually take you either unless you have a referral." This. Is. Insane.
Replies to "Hi, John. Boy, this just gets worse and worse. 'Spent the last 3 hours on the..."
I'm a year late on this, but I had the same experience. I like my doctor and have had him for years, but on this issue I suffered for a year while every test was fruitless, I discovered PMR on the internet and it took 6 more months to convince my doctor to ignore the Sed rate test and send me to a Rheumatologist! I think the real issue was insurance coverage. After turning 65 and getting Medicare with a good Supplement Plan, suddenly I had a Rheumatologist! The overall cost was far less than the $5000 you mentioned. On my first visit he listened to my story, asked a few questions, inspected my hands, and took some x-rays. Then said, "I agree with your prognosis!". By then I had given up my job as a volunteer softball coach at the local College, moved like I was 98, and hurt like hell when I had to drive, or even get out of bed and get dressed. Yet as a single parent, I still drove my daughter to school and back daily and did all of the shopping, cooking, etc. I have been on prednisone for a year and a half and am taking 6mg a day, (3 morning / 3 night). I am dropping it down 1 mg per month, (night dose first) accepting mild discomfort. My Rheumatologist said that daily dosage under 5 mg per day has shown no evidence of adverse effects. It has given me back my life. I have been clearing land, driving a tractor, and running a large chainsaw 3 to 4 days a week in hopes of building a new home!
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@ronhonn that is frustrating to say the least. I would encourage you to call the Office of Patient Experience at Mayo Clinic.
Office of Patient Experience
8 a.m. to 5 p.m., Monday - Friday
507-284-4988