New GI patient with questions as I prepare for Mayo! ❤️

Posted by kista77 @kista77, Feb 23, 2022

Hi everyone,
I am so happy to be here! I have a new patient appointment with Gastroenterology the end of March. I will be driving from Maryland to Minnesota. I have lost almost 80 pounds in a year and a half and have inflammation in small intestine that they do not believe is from ibd. Been on prednisone since the end of November. Finally down to 20mg as of 3 weeks ago but symptoms are slowly coming back and my joint pain is so much worse. Looking forward to my visit and praying that they figure out what is wrong with me. I feel confident that they will 🙏🏼😭 any suggestions or advice if you are willing to share would be appreciated. Thank you so much!

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@kista77

Thank you so much Jennifer for this information! Hopefully I will be able to take the tour as it looks beautiful! I am in a lot of pain right now in my hips and knees so it’s hard to walk too far. We are staying about 7 miles away from the Mayo. We need a dog friendly hotel for my moms little dog. I will have to double check if they have a shuttle.

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@kista77 The Concierge will probably have information on dog friendly hotels or rentals as they interview the hotels for lots of information before being added to the list for recommendations. There may be something a lot closer with a shuttle that is dog friendly. 7 miles, may be too far away for a hotel shuttle, but I don't know. As for the tour, you can arrange to have a wheelchair there. I couldn't do the tour because the only day I had was right after ankle surgery and I would have had to stay over a couple days for the tour date after I had surgical plates removed that had been placed after a fracture. I didn't know how much pain I would be in or if I would be able to walk well enough. I had crutches, but those are unwieldy and exhausting to use, and probably not allowed in an historic home. I hope you get a chance to do the tour. It is across the street from the historic Mayowood farm that was also owned by Dr. Charlie Mayo and is now a wedding venue.

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@jenniferhunter

@kista77 The Concierge will probably have information on dog friendly hotels or rentals as they interview the hotels for lots of information before being added to the list for recommendations. There may be something a lot closer with a shuttle that is dog friendly. 7 miles, may be too far away for a hotel shuttle, but I don't know. As for the tour, you can arrange to have a wheelchair there. I couldn't do the tour because the only day I had was right after ankle surgery and I would have had to stay over a couple days for the tour date after I had surgical plates removed that had been placed after a fracture. I didn't know how much pain I would be in or if I would be able to walk well enough. I had crutches, but those are unwieldy and exhausting to use, and probably not allowed in an historic home. I hope you get a chance to do the tour. It is across the street from the historic Mayowood farm that was also owned by Dr. Charlie Mayo and is now a wedding venue.

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Okay thank you so much! Sorry I meant a 7 minute drive. Fairfield Suite I believe is where we booked.

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@kista77

Okay thank you so much! Sorry I meant a 7 minute drive. Fairfield Suite I believe is where we booked.

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Hi @kista77, The Fairfield Inn & Suites does have a complementary Mayo Clinic shuttle. They are about 2 miles from the Mayo Clinic buildings downtown and close to the Hwy 52 and Hwy 14 interchange.

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@jenniferhunter

@regalrottweilers I had to look up "SIBO" and this Mayo link explains that it can be caused by a slowing of the passage of food and waste through the intestines.
https://www.mayoclinic.org/diseases-conditions/small-intestinal-bacterial-overgrowth/symptoms-causes/syc-20370168
I know because of the work that I do with my physical therapist, that constrictions or adhesions can affect the intestines and slow them down. Even pelvic alignment affects this if you have an inflare of the hip bones toward your belly. The pelvis is jointed which allows for movement of the bones during birth, but because major muscles connect to the pelvis, it can twist it or pull it out of alignment which can put pressure on the intestines passing though the abdomen. That may be an avenue to explore. My therapist does myofascial release which stretches tight tissue and tight tissue can cause pain. Here is our discussion about MFR. You wouldn't need a specific diagnosis to do this therapy. The therapist can assess with their hands the pattern of tightness in the body and follow that pathway to release it. It may take several sessions or weeks/months for results depending on how tight the body is. It is like peeling off the layers of an onion to find out what the next layer brings. I have had a lot of success with MFR.

Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

There is a provider search at http://mfrtherapists.com/

Has your evaluation included any physical therapy work?

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Does insurance cover MFR or it’s out of pocket . ??

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@rozy288

Does insurance cover MFR or it’s out of pocket . ??

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@rozy288 You will need to ask that question of a physical therapist. It depends on how they write their notes and they know what to say and properly code it. I think my PT may code it as manual therapy and muscle re-education. There are also notes to home exercises, etc. mainly for any PT, the insurance company wants to see evaluations that show progress. Call your insurance and ask what benefits you have for PT, and then have that conversation with a therapist. My visits are covered by my insurance. They may not recognize MFR as a specific modality and I don't have a specific answer to your question.

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@jenniferhunter

@rozy288 You will need to ask that question of a physical therapist. It depends on how they write their notes and they know what to say and properly code it. I think my PT may code it as manual therapy and muscle re-education. There are also notes to home exercises, etc. mainly for any PT, the insurance company wants to see evaluations that show progress. Call your insurance and ask what benefits you have for PT, and then have that conversation with a therapist. My visits are covered by my insurance. They may not recognize MFR as a specific modality and I don't have a specific answer to your question.

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Thanks for all this information!!

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Hi! I have my first appointment in march and she said to plan for 5-7 days of testing. My first question…do they do testing on the weekends? Or are we talking 5-7 business days? Also…is there anything you did or wish you had done for your appointment that I should make sure to do? Background:
I was diagnosed with Crohns 18 months ago, but have unexplainable pain and gas combined with constipation almost constantly. Always worse when I eat. My dr doesn’t like the look of my scans and he feels there is something mechanical or motility wise going on. But the surgeon refused to do exploratory surgery so he referred me to Mayo. I’m really hoping to get some answers and get my life back! 🥺🥺

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@nikkipooh79

Hi! I have my first appointment in march and she said to plan for 5-7 days of testing. My first question…do they do testing on the weekends? Or are we talking 5-7 business days? Also…is there anything you did or wish you had done for your appointment that I should make sure to do? Background:
I was diagnosed with Crohns 18 months ago, but have unexplainable pain and gas combined with constipation almost constantly. Always worse when I eat. My dr doesn’t like the look of my scans and he feels there is something mechanical or motility wise going on. But the surgeon refused to do exploratory surgery so he referred me to Mayo. I’m really hoping to get some answers and get my life back! 🥺🥺

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I went to Mayo Clinic Jacksonville for testing in Oct . They only did the Covid test on Sunday , then schedule tests Mon - Friday .
My tests were 2 hours n Mon and bigger test on Tues . We stayed Beach side at VRBO condo for n beach in Jacksonville Bch w our two pups .
I had to wait 7 months to get appt and testing done . Unfortunately this was my last resort after 8 years , 5 Gastro Drs in 2 states and over 15 tests done ✅, 6 diagnoses. They still cannot help me . I did everything holistic and diet wise and RX . I’m not healed and they look at me as medical mystery now ?
I hate it , it’s robbed me of 8 years of my life and counting ….
I pray you get results and fixed !

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@nikkipooh79

Hi! I have my first appointment in march and she said to plan for 5-7 days of testing. My first question…do they do testing on the weekends? Or are we talking 5-7 business days? Also…is there anything you did or wish you had done for your appointment that I should make sure to do? Background:
I was diagnosed with Crohns 18 months ago, but have unexplainable pain and gas combined with constipation almost constantly. Always worse when I eat. My dr doesn’t like the look of my scans and he feels there is something mechanical or motility wise going on. But the surgeon refused to do exploratory surgery so he referred me to Mayo. I’m really hoping to get some answers and get my life back! 🥺🥺

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Hi @nikkipooh79, welcome to Mayo Clinic Connect. I added your question to the Visiting Mayo Clinic group as well. You may find other discussions in this group to be really helpful. For example these ones:
- Tips for your first Mayo Clinic visit and tests/appt schedules: https://connect.mayoclinic.org/discussion/tips-for-first-dr-visit-and-testsappt-schedules/
- New Gastroenterology Patient going to Mayo Clinic in Roschester https://connect.mayoclinic.org/discussion/new-gastroenterology-patient/
- 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/

Which Mayo Clinic are you going to Nikki?

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@rozy288

I went to Mayo Clinic Jacksonville for testing in Oct . They only did the Covid test on Sunday , then schedule tests Mon - Friday .
My tests were 2 hours n Mon and bigger test on Tues . We stayed Beach side at VRBO condo for n beach in Jacksonville Bch w our two pups .
I had to wait 7 months to get appt and testing done . Unfortunately this was my last resort after 8 years , 5 Gastro Drs in 2 states and over 15 tests done ✅, 6 diagnoses. They still cannot help me . I did everything holistic and diet wise and RX . I’m not healed and they look at me as medical mystery now ?
I hate it , it’s robbed me of 8 years of my life and counting ….
I pray you get results and fixed !

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@rozy288 ,
Could I ask please: What was your diagnosis after your Mayo appointment? And what was your follow-up/treatment plan? Do you go back to Mayo? I’ve been following your mystery and curious as to how you are doing.

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