So many questions. Seeing Rheumatology and GI at Mayo JAX

Posted by sadie168 @sadie168, Fri, Mar 8 9:53am

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.

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?

REPLY

Hi @sadie168, I add my welcome. You may also be interested in this discussion in the Visiting Mayo Clinic group:
> Chronically Ill: Travelling by myself to Mayo Clinic FL first time https://connect.mayoclinic.org/discussion/chronically-ill-travel-by-myself-to-the-mayo-clinic-for-the-1st-time/

Sandy shares her experience with Rheumatology group at Mayo Florida in this story on Sharing Mayo Clinic https://sharing.mayoclinic.org/2018/11/07/seeing-purpose-in-sharing/
I think you'll find her story inspiring and relate-able. Sandy went to Mayo thinking she had an eye appointment. Turns out that doctors recognized that the eye problems were actually a complication of an underlying autoimmune disorder – rheumatoid arthritis.
Sadie, what is your first scheduled appointment in April?

REPLY
@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?

Jump to this post

Dear John I have the same medical problems and more than Sadie 168 and have an appointment at Mayo Jacksonville this Tuesday the the 12th of March. My appointment is with the vascular department. (have psoriatic and rheumatoid arthrtis with a third autoimmune disease plus psoriasis, hypothyhroidism, diabetes 2, copd, heart beats to fast, gloucoma, dry eyes. gerd, h-pylori, sqamous skin cancer, high blood pressure anemia kidney problems and very low white blood and iron and vascular swelling problems. I did not know what department to make the appointment for. My cardiologist made a referral to Mayo so I am starting there. Which I think is right because the opthamologist and the blood doctors think the lack of oxygen in the blood is severly affecting my eyesight and the vascular problems with the blood are creating much of the other problems. Quite confusing. Gulp! When I will be at the Mayo will they only address the vascular problem or will the take into consideration all of the many others and continue on from there or will they only address the vascular problems? I am bringing with me all the pertaining records just in case. Thank you for your reply Peach

REPLY

@sadie168 – I go to Mayo at Jacksonville on a regular basis. I would be happy to talk to you on the phone and can fill you in on the whole process. This facility is so wonderful. I will have to find out how to do a private message.

REPLY

@johnbishop – how do I do a private message.

REPLY
@tinkerbell

@johnbishop – how do I do a private message.

Jump to this post

@tinkerbell – the Get Started on Connect guide has step by step instructions for how to use Connect. There is a link at the bottom of every page on Connect to the Get Started on Connect guide – it's in the left hand column. Here is the direct link to the topic How to send a private message in the guide:

https://connect.mayoclinic.org/get-started-on-connect/#send-private-message

REPLY
@peach414144

Dear John I have the same medical problems and more than Sadie 168 and have an appointment at Mayo Jacksonville this Tuesday the the 12th of March. My appointment is with the vascular department. (have psoriatic and rheumatoid arthrtis with a third autoimmune disease plus psoriasis, hypothyhroidism, diabetes 2, copd, heart beats to fast, gloucoma, dry eyes. gerd, h-pylori, sqamous skin cancer, high blood pressure anemia kidney problems and very low white blood and iron and vascular swelling problems. I did not know what department to make the appointment for. My cardiologist made a referral to Mayo so I am starting there. Which I think is right because the opthamologist and the blood doctors think the lack of oxygen in the blood is severly affecting my eyesight and the vascular problems with the blood are creating much of the other problems. Quite confusing. Gulp! When I will be at the Mayo will they only address the vascular problem or will the take into consideration all of the many others and continue on from there or will they only address the vascular problems? I am bringing with me all the pertaining records just in case. Thank you for your reply Peach

Jump to this post

Hi Peach @peach414144 – the specialists in the different areas of the Mayo Clinic campuses work with each other to treat the patient and come up with the diagnosis and treatment. It's good that you are bringing your records with you. This was posted in another discussion but might be helpful for you too.

Your Tips on How to Get Off to the Best Start with a New Specialist — https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

REPLY

@johnbishop – Thank you.

REPLY
@johnbishop

Hi Peach @peach414144 – the specialists in the different areas of the Mayo Clinic campuses work with each other to treat the patient and come up with the diagnosis and treatment. It's good that you are bringing your records with you. This was posted in another discussion but might be helpful for you too.

Your Tips on How to Get Off to the Best Start with a New Specialist — https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

Jump to this post

Peach here. Thank you again Mr. Bishop. Ohhh, I forgot: On top of everything else I became septic in the later part of September last year 2018 and am still fighting to recover. Wow! Must smile. (Glad you are there for us says this 81 year old.)

REPLY

Make sure you get the Mayo app. You can keep up with your test results, doctor notes, and appointments. It is helpful to have someone go with you. Make notes of your visit. Make a list of questions you have before your visit and you may have some afterward. You can always ask questions after your visit via messages or phone.

REPLY
@fourof5zs

Make sure you get the Mayo app. You can keep up with your test results, doctor notes, and appointments. It is helpful to have someone go with you. Make notes of your visit. Make a list of questions you have before your visit and you may have some afterward. You can always ask questions after your visit via messages or phone.

Jump to this post

Thank yu Zaroga, Peach.

REPLY
@fourof5zs

Make sure you get the Mayo app. You can keep up with your test results, doctor notes, and appointments. It is helpful to have someone go with you. Make notes of your visit. Make a list of questions you have before your visit and you may have some afterward. You can always ask questions after your visit via messages or phone.

Jump to this post

Oh, what is an app? Sorry to be so out of the loop. I will bring a notebook and pen. Is that what you mean?Peach

REPLY
@peach414144

Oh, what is an app? Sorry to be so out of the loop. I will bring a notebook and pen. Is that what you mean?Peach

Jump to this post

Peach @peach414144, an app is short for application – small program downloaded on your smartphone. Mayo Clinic has one for patients that gives you the same access to your Mayo Clinic patient portal that a computer would. I like it because I can add electronic check-in for my appointments if it's in an area that uses the e-check in. Makes it easy, almost like a free pass to the head of the line ☺

REPLY

@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.

REPLY
@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?

Jump to this post

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. 🙂

REPLY
Please login or register to post a reply.