1. < Autoimmune Diseases

So many questions. Seeing Rheumatology and GI at Mayo JAX

Posted by sadie168 @sadie168, Mar 8, 2019

I have an appointment at the Jacksonville clinic in April. I can’t get answers with local doctors. I have so many things going on that I get eye rolls and passed on to another doctor with each appointment. I can’t begin to explain how it feels and I’m sure so many women with autoimmune disorders can relate to. I have an appointment with a rheumatologist and GI specialist. I guess I’m looking for others who have had experiences visiting this location and did they feel it was worth it. I have too many things to explain, but I have positive ANA, centromere, pernicious anemia, etc but there isn’t one part of my body that isn’t going crazy. The last rheumatologist said I had CREST but I honestly don’t think so. Anyway, if you have other things going in like vascular issues related to an undiagnosed condition what do they do because I was told they only do surgery not diagnosing or treatment. So will I just be told to go back to trying to find local doctors who can’t figure me out? I’m so overwhelmed and I would love to speak to someone who has gone through the Rheumatology group and GI group at Jacksonville. My appointments are in a Wednesday will they actually use the rest of the week to figure things out or just say I’ll have to come back at a later date? I know I’m all over the place, but I’m so overwhelmed with my health and I just want help finding a treatment plan that will helo get some of my life back.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

ZeeGee | @fourof5zs | Mar 9, 2019

@peach414144 You can download the app from here: https://www.mayoclinic.org/apps/mayo-clinic . You can also use your account through their web site here: https://gpsnetx.mayoclinic.org/psi/content/staticpatient/showpage/patientonline . Usually the app has more in depth. I have not signed into the website in a while so that may have changed.

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1 reply
sadie168 | @sadie168 | Mar 10, 2019
In reply to @johnbishop "Hello @sadie168, welcome to Mayo Clinic Connect. You will be in good hands at the Mayo..." + (show)
@johnbishop

Hello @sadie168, welcome to Mayo Clinic Connect. You will be in good hands at the Mayo Clinic Jacksonville Campus. Although the following discussion talks about Winter advice, you won't need that in Jacksonville ☺ The first post in the discussion by @colleenyoung has some great information and links that will be helpful for your upcoming appointment including great tips on getting started with a new specialist.

Groups > Visiting Mayo Clinic > First visit to Mayo and traveling alone: Winter advice?
-- https://connect.mayoclinic.org/discussion/first-visit-to-mayo-and-traveling-alone-winter-advice/

I have been through rheumatology at the Mayo Clinic Rochester Campus and I'm sure Jacksonville is similar. I'm sure they will help you get to the bottom of your health problem. It sounds like you are a little worried about the unknowns for your upcoming appointment. If I may ask, what worries you the most about your upcoming appointment?

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John, I guess I’m worried most about taking a leap of faith and traveling out of state to look for answers because as everyone knows, it’s money, kids, work etc. Realistically I can’t just run to Jacksonville to see doctors so it comes down to time frames I suppose. Also, I’m worried I will get that same blank stare that I’m so used to. Not one doctor in all of these years will look at my LONG list of issues and put them together to find a solution. I asked the last rheumatologist if I indeed had CREST can it be the cause of my GI issues and the stenosis of my celiac artery. She says I’m not a GI specialist. Then I ask the GI specialist and he said well I’m not a rheumatologist. A lady at MAYO concerned me because I asked a similar question and she said no the individual specialty groups do not work together per say, they just evaluate you and Internal medicine sends you to the specialties you need. I guess it comes down to the unknown. I was also concerned because there aren’t a lot of specialties there. I have to much to type about, but when asking about specialists I was told they don’t have them there. I can’t afford to fly to the larger MAYO clinics and stay there. Anyway, I could ramble on. I know I just need to stop stressing, go, and see what happens. Thanks for listening. 🙂

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2 replies
peach414144 | @peach414144 | Mar 10, 2019
In reply to @fourof5zs "@peach414144 You can download the app from here: https://www.mayoclinic.org/apps/mayo-clinic . You can also use your account..." + (show)
@fourof5zs

@peach414144 You can download the app from here: https://www.mayoclinic.org/apps/mayo-clinic . You can also use your account through their web site here: https://gpsnetx.mayoclinic.org/psi/content/staticpatient/showpage/patientonline . Usually the app has more in depth. I have not signed into the website in a while so that may have changed.

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Thank you but I need to go to school so I can learn how to use this smart phone and then purchase a smart phone. I have a flip top phone now. Doctors cannot help my failing eyesight. Gloucoma and.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 10, 2019

@sadie168, Hi Sadie. I have only been to the Rochester Mayo. However, I can sense your concern about your health conditioin and about yout time in Jacksonville. I want to share this information along with some video introductions to familiarize you with the Mayo Clinic Jacksonville Campus. I hope that you will find some helpful information that will provide some calm before you begin your travel and visit.
Mayo Clinic's Campus in Florida
https://www.mayoclinic.org/patient-visitor-guide/florida
Rosemary

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 10, 2019
In reply to @sadie168 "John, I guess I’m worried most about taking a leap of faith and traveling out of..." + (show)
@sadie168

John, I guess I’m worried most about taking a leap of faith and traveling out of state to look for answers because as everyone knows, it’s money, kids, work etc. Realistically I can’t just run to Jacksonville to see doctors so it comes down to time frames I suppose. Also, I’m worried I will get that same blank stare that I’m so used to. Not one doctor in all of these years will look at my LONG list of issues and put them together to find a solution. I asked the last rheumatologist if I indeed had CREST can it be the cause of my GI issues and the stenosis of my celiac artery. She says I’m not a GI specialist. Then I ask the GI specialist and he said well I’m not a rheumatologist. A lady at MAYO concerned me because I asked a similar question and she said no the individual specialty groups do not work together per say, they just evaluate you and Internal medicine sends you to the specialties you need. I guess it comes down to the unknown. I was also concerned because there aren’t a lot of specialties there. I have to much to type about, but when asking about specialists I was told they don’t have them there. I can’t afford to fly to the larger MAYO clinics and stay there. Anyway, I could ramble on. I know I just need to stop stressing, go, and see what happens. Thanks for listening. 🙂

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@sadie168 I can certainly understand where you are coming from - the unknown is a little scary. The response from the lady at Mayo you spoke with kind of surprises me a little. The way she described internal medicine sends you to the specialties you need kind of sounds like they work together to me. Mayo Clinic as a whole is a patient centered health system so they do referrals to other specialists when/as needed. I think they are really unique in the health care industry. Here's some information on their care:

The Mayo Clinic Model of Care is “carved in stone” at Heritage Hall
-- http://history.mayoclinic.org/toolkit/mayo-clinic-model-of-care.php

I'm hoping you will be able to share your experience after your appointment and that you get the answers and help you need.

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sadie168 | @sadie168 | Mar 10, 2019

Thank you to everyone who shared links and information. I will definitely post how my visit goes. Having these groups are so important for so many reasons. I’m glad I finally joined.

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redhead63 | @redhead63 | Mar 12, 2019
In reply to @sadie168 "John, I guess I’m worried most about taking a leap of faith and traveling out of..." + (show)
@sadie168

John, I guess I’m worried most about taking a leap of faith and traveling out of state to look for answers because as everyone knows, it’s money, kids, work etc. Realistically I can’t just run to Jacksonville to see doctors so it comes down to time frames I suppose. Also, I’m worried I will get that same blank stare that I’m so used to. Not one doctor in all of these years will look at my LONG list of issues and put them together to find a solution. I asked the last rheumatologist if I indeed had CREST can it be the cause of my GI issues and the stenosis of my celiac artery. She says I’m not a GI specialist. Then I ask the GI specialist and he said well I’m not a rheumatologist. A lady at MAYO concerned me because I asked a similar question and she said no the individual specialty groups do not work together per say, they just evaluate you and Internal medicine sends you to the specialties you need. I guess it comes down to the unknown. I was also concerned because there aren’t a lot of specialties there. I have to much to type about, but when asking about specialists I was told they don’t have them there. I can’t afford to fly to the larger MAYO clinics and stay there. Anyway, I could ramble on. I know I just need to stop stressing, go, and see what happens. Thanks for listening. 🙂

Jump to this post

Hi:
I did not know Mayo takes patients after the age of 65. I was told by a lady friend that Mayo will not take patients if they are 65 or older unless they have private health insurance not Medicare? Anyway I hope you find your answer.

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1 reply
ZeeGee | @fourof5zs | Mar 12, 2019
In reply to @redhead63 "Hi: I did not know Mayo takes patients after the age of 65. I was told..." + (show)
@redhead63

Hi:
I did not know Mayo takes patients after the age of 65. I was told by a lady friend that Mayo will not take patients if they are 65 or older unless they have private health insurance not Medicare? Anyway I hope you find your answer.

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@redhead63 They will accept Medicare under certain criteria (exactly what those are I do not know) but you will have to pay a little more out of pocket than usual with Medicare. I also have Tricare for Life.. another insurance that is not on their list of insurance accepted. I do not have anyone locally that can take care of my medical needs, so the Mayo Clinic works with my insurance companies.. The Mayo Clinic also takes patients with no insurance because they are the people's last hope.

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 12, 2019

@redhead63 and @fourof5zs -- You can find out more about billing and insurance at Mayo Clinic here: http://mayocl.in/2kk2hF8. I have Medicare and a Medicare Avantage plan and I am a Mayo Clinic Rochester patient though my primary care is a local Mayo Family Health Clinic in the area.

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rexsan20 | @rexsan20 | Feb 20, 2022

What rheumatologist are you seeing at Mayo Clinic in Jacksonville? I go also in April to see a rheumatologist. I want a good one.

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