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Joined: Apr 2013
Posts: 103
Journeyman_AS_Kicker
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OP
Journeyman_AS_Kicker
Joined: Apr 2013
Posts: 103 |
Hello Everyone,
I was wondering if anyone here has had experience at the Mayo Clinic.
My GI is sending me there. I don't have any idea on dates yet, but it seems he finds me to be an unusual case. I have AS, and both eosinophilic colitis and esophagitis, and then they did a liver biopsy and found I have stage 2 fibrosis (this is by far the most serious concern).
He is hoping that the Mayo Clinic might be able to figure out why I'm "so lucky" to have all these different ailments...In other words, what links them all together.
Last edited by David812; 10/30/13 05:48 PM.
David
Diagnosed AS August of 2012
Diagnosed with Eosinophilic Esophagitis/Colitis or Crohn's August 2013
Currently taking Cimzia, Naproxen, and the occasional Tramadol
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Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
Karen that used to be here went there to get diagnosed and was sorely disappointed that they couldn't diagnose her. But your symptoms are completely different..... Good luck at having it figured out! 
sue
Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Joined: Nov 2002
Posts: 6,928 Likes: 3
Addicted_to_AS_Kickin
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Addicted_to_AS_Kickin
Joined: Nov 2002
Posts: 6,928 Likes: 3 |
Hello,
I went to Mayo Jacksonville probably 10 years ago and I was very pleased with my visit and with all of the doctors that I saw. Do you know which facility you are going to?
I saw 2 internists to began with and then in each field, I saw 2 different drs. I was pretty impressed with them. I have multiple problems and we wanted to see if we were missing anything. I saw Neurologists, ENT's, Rheumatologists and the Internists plus lots of lab work which they ended up doing over and sending to MN which they told me had the best lab in the world.
I hope it is a good visit for you and that you get the answers that you need.
If you have any questions (even though it has been 10 years) I will be happy to visit with you. I am sure lots of things have changed in 10 years.
Blessings.
![[Linked Image]](https://www.kickas.org/images/flowers/Smilingsun.gif) Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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Joined: Apr 2013
Posts: 103
Journeyman_AS_Kicker
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OP
Journeyman_AS_Kicker
Joined: Apr 2013
Posts: 103 |
Sue, thanks. That's too bad for Karen. If you can't get diagnosed at a place like Mayo, then where?
Possi, thanks for the feedback. The doctor wants me to go Rochester, MN. So, I guess that's where I'll go, even though I have family in Phoenix. I don't know anyone in Minnesota.
David
Diagnosed AS August of 2012
Diagnosed with Eosinophilic Esophagitis/Colitis or Crohn's August 2013
Currently taking Cimzia, Naproxen, and the occasional Tramadol
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Joined: Nov 2002
Posts: 6,928 Likes: 3
Addicted_to_AS_Kickin
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Addicted_to_AS_Kickin
Joined: Nov 2002
Posts: 6,928 Likes: 3 |
That is probably a good call. We only went to FL because it was summer and we could get in quicker and also we have a daughter and family in Tampa. We made a vacation out of it as well.
I was very impressed. I am glad you are going.
Be sure and let us know what you find out.
Blessings.
Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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Joined: Apr 2013
Posts: 103
Journeyman_AS_Kicker
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OP
Journeyman_AS_Kicker
Joined: Apr 2013
Posts: 103 |
Will do, Possi. I am eager to get the date for an appointment, but I've also learned some patience over these last 2.5 years. So many of you had to wait so long to even get on the right track. For the most part, my doctors have been outstanding and I didn't spend two much time in neutral once I got past my GP and local sport's doctor.
David
Diagnosed AS August of 2012
Diagnosed with Eosinophilic Esophagitis/Colitis or Crohn's August 2013
Currently taking Cimzia, Naproxen, and the occasional Tramadol
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Joined: Apr 2013
Posts: 103
Journeyman_AS_Kicker
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OP
Journeyman_AS_Kicker
Joined: Apr 2013
Posts: 103 |
Well, that was fast. I have an appointment at Mayo on the 19th. I will let you know what they discover.
David
Diagnosed AS August of 2012
Diagnosed with Eosinophilic Esophagitis/Colitis or Crohn's August 2013
Currently taking Cimzia, Naproxen, and the occasional Tramadol
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Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
Good luck! Hope its a productive trip; I imagine that it should be.
sue
Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Joined: Nov 2002
Posts: 6,928 Likes: 3
Addicted_to_AS_Kickin
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Addicted_to_AS_Kickin
Joined: Nov 2002
Posts: 6,928 Likes: 3 |
That was very fast! I got in pretty quickly too.
I will be anxious to hear what you find out and also what you think about the clinic.
I would never hesitate to go back.
Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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Joined: Apr 2013
Posts: 103
Journeyman_AS_Kicker
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OP
Journeyman_AS_Kicker
Joined: Apr 2013
Posts: 103 |
Possi, I never imagined getting in so quickly and now I just want to get on with it! I'm always working on my patience (or trying to).
I'll be sure to report back. The first doctor I'm meeting with specializes in autoimmune liver disease. I hope he also sets me up with a rheumy while I'm there, but I know they know what they are doing and I just have to trust the process.
David
Diagnosed AS August of 2012
Diagnosed with Eosinophilic Esophagitis/Colitis or Crohn's August 2013
Currently taking Cimzia, Naproxen, and the occasional Tramadol
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