I have been an observer in this forum for quite some time, but I figured that it is time to post and ask some questions! I have had stomach problems for the past 20 years and I was diagnosed with IBS a few years after they began. This diagnosis seemed fine and my stomach was, for the most part, manageable. About 5 years ago, I started having trouble with eye inflammation which eventually turned out to be episcleritis. I got really sick 3 years ago with diarrhea and vomiting and they removed my gall bladder. I felt great for 6 months and then my stomach got really bad. Horrible diarrhea and cramping, low grade headaches in my left eye...all the time, and eye inflammation whenever my stomach acted up. This has been going on for two years, and I have seen a GI Specialist, a Neurologist, and a Rheumatologist. Over that time I have also developed joint pain in my ankles, knees, and neck that moves around. I have this crazy itching on my calves that comes after a stomach attack. I sometimes get this tickle and cough in my throat that also coincides with the stomach pain. My eye always turns red when my stomach is giving me trouble. My GI has done every workup possible: colonoscopy, endoscopy, CT enterography, capsule endoscopy, and every lab possible. The results are negative. The only thing they can confirm is gastritis visible on endoscopy and capsule endoscopy. All biopsies are negative, and inflammatory labs are negative. They even drew a Prometheus Panel (can't remember name), and the only thing to note was that pANCA was negative and ASCA was positive. GI doesn't think this is enough to make diagnosis so is recommending that I go to Rochester, MN and see the internists/GI/Rhem at Mayo. This will be a huge trip for me, and very difficult with my job and my family. On one hand...I really have to figure this out and get some kind of treatment! On the other hand...what could they possible do that hasn't been done? Has anyone gone to Mayo to get diagnosed? Is there any other place that anyone would recommend? GI doc is wanting a "multidisciplinary approach" because she is not sure that it is specific to GI. I know that I should probably go because I am out of options here, but I am worried that I will fly across the United States for someone to tell me it's in my head! Anyway...hoping for some good suggestions ! Thanks in advance!
Anyone been to Mayo?
- Thread starter 4forme
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Welcome to the forum :ghug: and I am sorry to hear of your troubles.
Being in the UK I don't have any experience with the Mayo clinic, what I would suggest is running a search here on the forum to see others discussions, as I do come across mentions now and then on other sections.
Being in the UK I don't have any experience with the Mayo clinic, what I would suggest is running a search here on the forum to see others discussions, as I do come across mentions now and then on other sections.
Hi! I went to Mayo in Rochester in July. It was by far the absolute best experience I have had since being diagnosed 2 years ago. I was there for a full week and they did all sorts of blood/stool tests, a CT scan with Barium, a colonoscopy and endoscopy and 2 actual appointments with the Doctor (one on first day and then again after all my tests were complete. To this day I still communicate with my 'team' of doctors there and they are involved in my care. I would highly reccommend the trip if you feel you're not getting anywhere with your current Doctors.
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I have another illness (not Crohn's) where I thought I had had every test under the sun. I'm in the UK, and after over a decade of tests and consultants locally, I was referred to a world specialist in London. They diagnosed me. I really wasn't expecting it. The right doctor can make all the difference.
That said, I wouldn't get your hopes up too much: the tests you've had have been comprehensive. What a new, superior specialist may be able to do is judge whether there are some rarer, more specialised tests that could be done or consider if there is a diagnosis that relies on symptomatic criteria rather than objective test results. Another possibility, since you have symptoms that are not focused on the digestive system, would be that a new specialist could consider conditions which affect more parts of the body together (rheumatological, neurological, etc.) and conduct tests that are directed at these rather than the scopes, etc. that focus on the digestive tract (digestive symptoms can be caused by, for example, neurological conditions, which might be detected by tests of the spine or brain), or alternatively, could consider that that you have more than one unrelated condition going on at once, and that diagnosis has been confused because doctors are trying to account for everything together.
Perhaps you could also ask for help with symptom management, even if a diagnosis cannot be reached, though some doctors do seem to feel that a diagnosis has to come first.
So while I can't speak for Mayo, I would be cautiously hopeful about going to another level of specialisation.
That said, I wouldn't get your hopes up too much: the tests you've had have been comprehensive. What a new, superior specialist may be able to do is judge whether there are some rarer, more specialised tests that could be done or consider if there is a diagnosis that relies on symptomatic criteria rather than objective test results. Another possibility, since you have symptoms that are not focused on the digestive system, would be that a new specialist could consider conditions which affect more parts of the body together (rheumatological, neurological, etc.) and conduct tests that are directed at these rather than the scopes, etc. that focus on the digestive tract (digestive symptoms can be caused by, for example, neurological conditions, which might be detected by tests of the spine or brain), or alternatively, could consider that that you have more than one unrelated condition going on at once, and that diagnosis has been confused because doctors are trying to account for everything together.
Perhaps you could also ask for help with symptom management, even if a diagnosis cannot be reached, though some doctors do seem to feel that a diagnosis has to come first.
So while I can't speak for Mayo, I would be cautiously hopeful about going to another level of specialisation.
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I am fortunate to live an hour and a half away from Rochester Mn and went to Mayo for my diagnosis and bowel resection. I can say that I would not have wanted to be anywhere else. They are excellent in what they do. The resection went smooth as well. If fact, their pain control procedure is so good that all I needed after surgery was Tylenol and Motrin> I highly recommend
