Mayo Clinic Connect
Okay I’m going next to Mayo in Scottsdale to see a motility specialist for Gastroparesis and SIBO. Anyone been treated here or have advice?
I am pumped.
That’s great @clemlaa! As you probably noticed when you registered for Connect, we don’t ask people to say where they live or where they’ve been treated, so I’m not sure who in our group has been to Scottsdale AZ Mayo facilitiy. @saucy mentioned that she has the motility and other tests at Mayo. Was this in Arizona Saucy?
@shosh37, @patreats5674, @lateacher, @faycarole and @citygirlannie – you have all discussed SIBO and Gastroparesis in the past. What advice do you have for clemlaa for her upcoming appointment? Are there any crucial questions she should ask her doctor?
Clemlaa, Please let us know how your appointment goes and what you learn.
I feel so relived. I’ve been having health problems relating to digestion (possible gastroparesis and SIBO) and have been feeling so bad. Had to take medical leave from work. Desperate to get answers and find doctor to help me (local GI had very limited expertise and tried to get me on heavy meds even though gastroparesis was hit or miss and didn’t seem to be permanent). Scared and desperate for help I called Mayo Clinic and was able to get in with GI motility specialist. Started with him. Very good. Within one visit he ordered me at least 10 tests and had me seeing neurologist and other specialists and had cardiologist check out my heart. Turns out my case is very complex and I could have POTS, EDS type 3, or a few other syndromes. Good news is they are getting to the bottom of it. I’ve spent one week here and am feeling like a lot was accomplished and return week of October 11 for two pivotal tests which should give me the answers I need. I am so grateful I came here and the first in my family to go to Mayo. Wow we are so impressed and relived. Scottsdale is where I am being treated and GI & Neurology dpt is kicks$$, top notch. I’ve heard Rochester is the main hub of Mayo with good doctors too. God bless the Mayo. I hope there is a treatment plan to get me well. Whatever they tell me to do I am doing it all the way. I trust these experts.
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Thank you very much for sharing your story here @clemlaa. With your permission, I would love to send this to GI department at Scottsdale.
Oh gosh please no. I think the GI dpt has seen enough of me! Haha. They rock.
I’m so glad you are feeling some relief. The Mayo doctors saved my mother’s life, when nobody else could diagnose her as having a bowel obstruction (bee-zore). They also treated her for cancer many years later, and she’s in remission over 5 years since. You are in good hands.
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
@clemlaa How wonderful that you are getting answers! Congratulations to you and the docs at Mayo, they sound great.
Your report is great. Mine, however, is just the opposite. I spent 4 months with Mayo, and it was a nearly complete disaster. They completely ignored the issue I came for, and played around with 20 or so other areas of little importance. I spent a week preparing a list of medical signs to get things off on the right foot, and save time and money. A real waste of $50,000. Not any MD even glanced at the list, apparently. We need a talk group centering on medical blunders at Mayo.
I don’t think we need to create a group on blunders, any place will have mistakes. Did you find a solution elsewhere, and what it was would be more helpful.
Liked by Colleen Young, Connect Director
Well, I have found a great deal of help in a book written by staff at Mayo Rochester, edited by Dr. Morey Gertz, Amyloidosis: Diagnosis and Treatment. That book was my primary reason for going to Mayo AZ in the first place. But now I am in the process of looking for a new set of doctors to deal with my Serum Free Light Chain AL. One thing that would have helped would have been the knowledge that the various Mayo facilities pay no attention to the work done in other Mayo facilities. Had I known this, I would have gone elsewhere. My MDs at AZ all admitted they had no clue who Dr. Gertz MD is. The second issue, of course, is that my medicos in Oregon wiped from my records as much negativity as they could find. Now I am apparently consigned to an early death, median life expectancy of a few months.
Glad to hear you had good results. I too saw a gastro specialist in Rochester and can say she really knows her stuff!!!
Can you share the name of the doctor you liked?
Sure it is Dr. Jean Fox in Rochester. I just love her.
Thank you. What area of digestive health does she work with? How has she helped you? I am looking for someone to work with me.
Liked by Teresa, Volunteer Mentor
@upnorthnancy I just looked her up on the internet, here is the link to her information:
Liked by Colleen Young, Connect Director, Nancy
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