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.

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lauraharris111 | @lauraharris111 | Apr 30, 2022

Same boat...I'll be in jax tomorrow til the 11th, having to go there from Missouri seeing Rheumatology for a diagnosis of sarcoidosis and cutaneous skin Lupus. When is your appts?

Rochester and AZ is booked out a year...I just took what I could get.

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2 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | Apr 30, 2022
In reply to @lauraharris111 "Same boat...I'll be in jax tomorrow til the 11th, having to go there from Missouri seeing..." + (show)
@lauraharris111

Same boat...I'll be in jax tomorrow til the 11th, having to go there from Missouri seeing Rheumatology for a diagnosis of sarcoidosis and cutaneous skin Lupus. When is your appts?

Rochester and AZ is booked out a year...I just took what I could get.

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Hi @lauraharris111 I see that you’re going to Mayo Clinic in Jacksonville, FL. Do you have someone going with you? Did it take a long time to finally get the appointment? Be sure to write everything down and save all the paperwork you are given! Your homework will be to read and try to understand it. That’s why a 2nd person is so valuable!
How have you been coping with the ‘supposed’ diagnosis of sarcoidosis and lupus? I wish you lots of luck with your appointments! Be sure to keep me informed. Will you?

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1 reply
rexsan20 | @rexsan20 | May 1, 2022
In reply to @lauraharris111 "Same boat...I'll be in jax tomorrow til the 11th, having to go there from Missouri seeing..." + (show)
@lauraharris111

Same boat...I'll be in jax tomorrow til the 11th, having to go there from Missouri seeing Rheumatology for a diagnosis of sarcoidosis and cutaneous skin Lupus. When is your appts?

Rochester and AZ is booked out a year...I just took what I could get.

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Hey,

I will be going to the Jax Mayo on May 10th. I am seeing a rheumatologist also.....Who are you seeing? Just wandering.........

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2 replies
lauraharris111 | @lauraharris111 | May 2, 2022
In reply to @rexsan20 "Hey, I will be going to the Jax Mayo on May 10th. I am seeing a..." + (show)
@rexsan20

Hey,

I will be going to the Jax Mayo on May 10th. I am seeing a rheumatologist also.....Who are you seeing? Just wandering.........

Jump to this post

Dr Abril

REPLY
rexsan20 | @rexsan20 | May 2, 2022
In reply to @becsbuddy "Hi @lauraharris111 I see that you’re going to Mayo Clinic in Jacksonville, FL. Do you have..." + (show)
@becsbuddy

Hi @lauraharris111 I see that you’re going to Mayo Clinic in Jacksonville, FL. Do you have someone going with you? Did it take a long time to finally get the appointment? Be sure to write everything down and save all the paperwork you are given! Your homework will be to read and try to understand it. That’s why a 2nd person is so valuable!
How have you been coping with the ‘supposed’ diagnosis of sarcoidosis and lupus? I wish you lots of luck with your appointments! Be sure to keep me informed. Will you?

Jump to this post

I have not been diagnosed with sarcoidosis and already been tested for lupus. I don't have lupus.

Thank you!

I have been to this rheumatologist before but now he needs really figure out what is going on.......

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lloydje1 | @lloydje1 | May 2, 2022
In reply to @dakari "I know exactly what you are talking about. I was diagnosed with sero-negative RA two and..." + (show)
@dakari

I know exactly what you are talking about. I was diagnosed with sero-negative RA two and a half years ago . I'm on my fourth doctor and more medications, injections and infusions than I can count. I've had so many MRI's that I'm on a first name basis with all the radiology technicians. Besides my RA do, I'm seeing a GI specialist, a hematologist, an ophthalmologist, a dermatologist and a pain management specialist - besides my regular GP. I am so full of drugs that can kill me, I just want to say stop and let the disease take its course. But somehow and for some reason, I keep getting up in the morning hoping for a better day... and some days things are better. I guess we fight the good fight until we can't fight any more

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Dakari,
I was diagnosed with RA in January 2022. Looking back, I’ve had RA episodes since 2006 but was misdiagnosed with Lyme’s disease, which has very similar symptoms until the knuckles began flaring in December which was the tell-tale sign. My CCP was 250 and sero positive. I began Rinvoq in March and due to insurance switched to Enbrel in April. I’ve had two months of drug therapy. I also started whole food plant based, low-fat diet 3 weeks ago. That is when I began to experience big changes.
I also have been experiencing digestive disorders. My Rheumatologist says its unrelated to RA but the online information I’ve gotten says RA causes low stomach acid which makes it difficult to digest proteins and fats, hence the diet.
Until I began cutting out fats, especially the hidden ones in salad dressings and other processed foods, I still had issues with digestion. When I avoid oils/fats I can sleep well. The proof is in the pudding. You have to try whole food plant based, low-fat to see if it helps. I urge anyone with RA to watch youtube videos of the Paddison Program.

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marilynredder2367 | @marilynredder2367 | May 2, 2022
In reply to @rexsan20 "Hey, I will be going to the Jax Mayo on May 10th. I am seeing a..." + (show)
@rexsan20

Hey,

I will be going to the Jax Mayo on May 10th. I am seeing a rheumatologist also.....Who are you seeing? Just wandering.........

Jump to this post

This is Florida. Please don’t expect much. Mayo in Rochester Minnesota is completely different. I needed a doctor to read a pet scan for GCA a few years ago and they told me they couldn’t help me. They did not have a radiologist capable of diagnosing GCA from a PET scan. Mayo in Minnesota is fabulous.

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1 reply
rexsan20 | @rexsan20 | May 2, 2022
In reply to @marilynredder2367 "This is Florida. Please don’t expect much. Mayo in Rochester Minnesota is completely different. I needed..." + (show)
@marilynredder2367

This is Florida. Please don’t expect much. Mayo in Rochester Minnesota is completely different. I needed a doctor to read a pet scan for GCA a few years ago and they told me they couldn’t help me. They did not have a radiologist capable of diagnosing GCA from a PET scan. Mayo in Minnesota is fabulous.

Jump to this post

Thank you

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tomashj | @tomashj | Apr 17 12:32pm

Hi Sadie: I have been bouncing around a bit as well. Turns out in addition to rheum I have low Vit D. Insurance usually does not cover vitamin bloodwork but have them checked! I just started injections and gut is clearing up, some of the bone pain is disappearing. Good Luck!!

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