Wow, I just received a similar email. I’ve suffered from constant, chronic pain, from head to toe, for nearly 15 years now. It was manageable for the first several years, but has become very debilitating, over that past 10 years, I’ve been to probably seen 20 different doctors (including 6 rheumatologists and 5 neurologist) in Dallas and had many tests run. No one can diagnose why my inflammation markers are alway 4 to 5x the max for normal or why my muscles, head, eyes, etc, ache all day, every day. Though I know I have osteoarthritis in my spine and hips, that doesn’t explain the total body pain. I’ve also been told I “probably” or “maybe” have Fibromyalgia, but I don’t have the classic hot spots and that still doesn’t explain my inflammation.

My current rheumatologist just calls it an “undiagnosed autoimmune disorder.” I’ve tried all kinds of meds and, and still take several. I also now see a pain management doctor for strong pain meds, but even with that, my daily pain is never, ever, less than a 6.

Throughout this process, I’ve also nearly died from ARDS (with no identified cause) and been thru prostate cancer undergoing brachytherapy to kill my prostate/cancer. My rheumatologist would like to try a biological, but they are not recommended if you’ve had major infections and/or cancer in the past 5 years. Well, I’ve had both.

Along the way, I’ve had more than one doctor suggest going to Mayo, but I was concerned about the cost and available time to go up there. That said, I’ve always thought of Mayo as my last resort. Surely they could get to the bottom of why I feel terrible all the time.

So, with my wife’s encouragement, I finally called to set up an appointment. The young man I talked to in the new appointment department was very friendly and encouraging. Last Friday, we spent over an hour and a half going thru my medical history and new patient questionnaires. He said I’d definitely hear back by the following Friday (tomorrow) with all the details on my appointment.

Concerned that maybe I gave them too much information, I called the internal medical department, back on Monday, to tell them though I provided every medical issue, I’ve ever had in my 56 years, I wanted to make sure they know the only real reason I’m coming to Mayo is to try to diagnose why I feel terrible. The young lady there, was also very nice and assured me they were reviewing my file in detail and would get back with an appointment in a couple days. She also said she’d add notes to my file, from our conversation, and make certain the doctors got that message.

So late yesterday, I received a brief email (with a “do not reply” notice) telling me they’ve rejected my appointment request because they have determined they can’t do anything for me. WTH? I had no idea that was even a possibility. Never even occurred to me. Like I said, Mayo was my last real hope at ever feeling any better, for the rest of my life, and they’ve taken a pass. I’m both shocked, frustrated and considerable sad.

For what it’s worth, I grew up in northeast Iowa…a couple hours from Mayo in Rochester…and always thought they were the best of the best, smartest of the smartest and would help anyone if their medical conditions became too complicated for other doctors to figure out. Boy was I wrong. It bring tears to my eyes just writing this. Thanks Mayo, have a great life. BD

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