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MCTD: Preparing for evaluation appointment at Mayo Clinic

Posted by callieb1102 @callieb1102, Jan 13 6:03am

Recently diagnosed with MCTD (Lupus & PA/OA, tested positive for RA, but no symptoms yet) Prescribed Plaquenil & just started Tremfya (1st injection was last week). I have an evaluation appt at the Mayo Clinic in Jacksonville,FL, on 1/18. Any suggestions? Experiences to share? I am a 62 ye old female living in St Petersburg, FL. I have been very active my whole life until about 6 mos ago. Thanks for any input and sharing!!

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GDCM | @gdcm | Jan 15 6:10pm
In reply to @callieb1102 "Well, my hematologist supposedly tried to get me an appointment three years ago. I was finally..." + (show)
@callieb1102

Well, my hematologist supposedly tried to get me an appointment three years ago. I was finally told (after I called his office and never hearing back) that May Clinic was not taking any new patients for Hematology. It was on this chat platform that someone recommended that I try without a referral to get an appointment, so that's what I did. I logged in, requested an appointment and they called me to set up another call, but unfortunately, Hematology is not taking new patients BUT Rheumatology was. Just trying to get my foot in the door and maybe, just maybe I can eventually be seen by the Hematology dept. That's how I got the appointment. Good Luck!

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You are on the right step…I got in to Mayo via GI. Then primary care. I have only been with Rheumatology a few years, and only once they had hired a new Rheumatologist for the department in Mayo AZ. (I got my husband into Mayo by making an appt for him with me in the Mayo Travel Clinic (Infectious Diseases). Once he had a Mayo patient # I was able to get him in with the same PCP that I had…and was accepting new patients; now he also gets referrals from our primary care physician to whomever he needs to see. Keep trying!

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baldboy67 | @baldboy67 | Jan 16 7:40am
In reply to @cblue "How hard is it to get an appointment? Any suggestions about that?" + (show)
@cblue

How hard is it to get an appointment? Any suggestions about that?

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For a hematology-related issue, I filled out and submitted the online request for an appointment around November 1st, 2023. I received a phone call two hours later and found they had an appointment the first week in December of 2023.

I am not claiming this is normal, as this is my only interaction with Mayo. I will tell you that Mayo is worth getting an appointment with if you have a difficult-to-treat or rare condition. I would start by filling out the online form.

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gila | @gila | Jan 16 10:27am

Just tried to get into Mayo Phoenix and was denied. No dermatology or rhuematology appts are being accepted. Just read the comment of the person who just kept calling and finally got in. Good for you for your persistence ! and reminds me that old saying “squeaky wheel gets the grease”.

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harley22 | @harley22 | Jan 16 12:13pm
In reply to @callieb1102 "Jacksonville, FL" + (show)
@callieb1102

Jacksonville, FL

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Right now I living in Florida, but am building a home in Phoenix Az.
Would like to get established at Mayo for CIDP and MGUS.
I’m unable to walk due to numbness and tingling in both feet, and use a cane or walker.
Numbness now in my right hand, unable to hold things such as forks to eat,etc.
My question is should I wait til I’m in Phoenix to get an appointment or should I start here in Florida?
I don’t know when I’ll be in Phoenix for sure,may be close to a year.

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callieb1102 | @callieb1102 | Jan 16 7:24pm

If I were you, I would start here in Florida. They can always transfer you and records to AZ and you will not have wasted another year.
Much 🍀 luck!

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cblue | @cblue | Jan 17 10:32am

I suspect no one knows, but is it easier to get into Florida than Rochester. It seems they’re more Rheumatologist and Rochester.

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