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Can't get an appointment: Any tips on what to do?

Visiting Mayo Clinic | Last Active: May 9 8:13pm | Replies (187)

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@christiane5

I've tried for 3 years to get an app't at any location for rheumatology. I finally got a call 2 weeks ago on Friday and was told to have my rheumatologist submit my records. Mayo Clinic ended up having to call them to get them faxed. The problem is, my rheumatologist does not have all of my lab results. The lab kept sending them to my PCP, instead of my rheumatologist. However, I have the printouts of all my lab results since November, 2019. I was going to fax them myself to the rheumatology dept. first thing Monday morning. Just as I was getting ready to leave to go to UPS to have them faxed, I got a call from Mayo Clinic telling me my records had been received Friday afternoon and had been reviewed and they were sorry but they were declining my request for an app't. I was so devastated. I was diagnosed with both PMR and GCA by my current rheumatologist on my very first app't with him, but my symptoms do not fall in line with PMR. On a subsequent visit, I asked him if he was confident in his diagnosis and he said he was until I mentioned I had severe cramps in my feet. (I actually have them EVERYWHERE and a neurologist is who suggested I see a rheumotolgist.because of the cramps.They are so severe, I literally scream in pain. I call them full-body charley horses)
I had a temporal artery biopsy for GCA that came back negative. I had been on prednisone for 6 months and was told the result would probably be negative because of it, but it would be impossible to tell if it was a false negative because of the prednisone. However, I have had transient vision loss in my right eye that has lasted for over an hour. I'm terrified of losing the sight in that eye completely. I have a non-stop headache behind my eye that I've had for along time.
Is there ANYTHING I can do to try once more for an app't? I'm feeling pretty desperate at this point.

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Replies to "I've tried for 3 years to get an app't at any location for rheumatology. I finally..."

Hi Christiane, welcome. I can imagine that you are feeling disappointed and desperate. You'll notice that I moved your question to this existing discussion where members offer tips on what to do if you can't get an appointment. I invite you to read through the past posts.

If you feel that the Mayo physicians may rule differently with a complete set of your records, I suggest you call Mayo Clinic to ask for a secondary review after you've sent the remaining documentation.

I should add that appointment denial may be related to capacity issues. The department may not be accepting new patients at this time. Again, I would ask for clarification.

Another option is to consider seeing a doctor within the Mayo Clinic Care Network https://www.mayoclinic.org/about-mayo-clinic/care-network.
"The Mayo Clinic Care Network is a select group of independent health systems that are granted special access to Mayo Clinic's extensive knowledge and world-leading medical expertise. Carefully vetted and selected for their commitment to high-quality patient experience, care network members share Mayo Clinic's goal of providing patients the care they need, close to home, at no additional cost to the patient."

Find a health system in the Mayo Clinic Care Network near you: https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members

@christiane5 I learned, the hard way, that if one is turned down by Mayo for an appointment, there are a few things to do. Turned down once, Submit everything again. Turned down 2x, Call MD Anderson for an appointment. 3x, remember, with Mayo, it is all a matter of money, so sell your house and car, and ask again. 4x, get your own whole genome sequencing, find a good geneticist to help you understand what your genome shows, 5x If that fails, 6x, go to Mexico for treatment. It won't help you, except to make you think you are doing the only thing left, and you will probably have to share your room with a family with 16 children, 3 dogs, a goat and two chickens. (I actually saw this in Piedras Negras a few years ago. The excess family members lived across the street in the homeless camp. They took turns showering in your hospital room. I don't know how the patients who were staying in beds in the hallways managed the showers and toilet arrangements.) 7x find a carnival with a fortune teller or acupuncture artist.