Mayo Scottsdale Gastro experience?

Posted by clemlaa @clemlaa, Sep 22, 2016

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.

@clemlaa

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.

Jump to this post

Hi Karl, I pray for your recovery. And I conquer recovery experiences have too many variables involved and doctor experiences vary too widely. It’s frustrating to read about one doc that specializes in personal symptoms and not be able to get help from them or even know who to trust in your specialized needs. My case is very complex and there are so many more concerns and questions I have and I hope I’m being screened for everything including autoimmune hepatitis and other autoimmune dysfunctions. I find good information on various conditions that pertain to my symptoms and experience of getting sick after some sort of viral attack on Mayo research data and articles available and I’m not sure I’m being looked at from all the angles of what Mayo researches but I figure that got to start somewhere. I do not google various conditions because it scares me to death. I only look them up to familiarize myself to be able to communicate to doctors but it’s all so complex. And so far Mayo literature is really good. Whether I can get screened and on a treatment plan that will save my life is another ballgame and I hope and pray works out. I don’t know what else I can do. Just try the best I can and get help from experts and hope I’m lucky enough to have a treatment plan to help me recover. I need to face the alternative of no recovery and early death to be realistic but I have GOT to stay positive. I do not want to die early. But neither did my father bless his heart.

Sorry for rambling I pray for you Karl. Kind regards, Lindsay

REPLY
@kidbjp

Sure it is Dr. Jean Fox in Rochester. I just love her.

Jump to this post

motility specialist, for one thing, which is one area that she helped me very much in. Very smart and knows her stuff

REPLY
@clemlaa

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.

Jump to this post

Thanks for your comment. Can you please give me the name of the gi doctor you saw in Rochester.
Thanks

REPLY
@clemlaa

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.

Jump to this post

Welcome to Connect, @emeicl.
You were asking for the name of the GI doctor, at Mayo Clinic in Rochester, so I’m tagging @kidbjp, who mentioned having seen a gastro specialist in Rochester who really knew her stuff.
If you are interested in scheduling an appointment at Mayo Clinic you can find appointment information here http://mayocl.in/1mtmR63.

@emeici, do you have a GI problem that you are concerned about? Could you give us some details?

REPLY
@clemlaa

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.

Jump to this post

Could you tell me more about this book thanks Deena

REPLY
@clemlaa

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.

Jump to this post

Hi @mrsdeece,
The book is Amyloidosis: Diagnosis and Treatment; (Editors: Gertz, Morie A., Rajkumar, S. Vincent), and seems to be the most up-to-date resource on Amyloidosis.
If you do read it, please let us know your thoughts.
Thanks much.

REPLY
Please login or register to post a reply.