← Return to Undiagnosed after 1.5yrs after many tests and specialists

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@contentandwell

@jc123 Hi, Jon. Welcome to Connect.
I went through a similar thing with not being diagnosed for almost a year and a half. My symptoms were not similar to yours, just the lack of a diagnosis is. What I learned is if I ever again do not get a diagnosis here in southern NH to head right to Boston. It turned out that I had non-alcoholic cirrhosis. If I had not gotten diagnosed when I did the malignant lesions that had developed may have increased in size or number rendering me not a candidate for a liver transplant. Thankfully I was diagnosed in time and I had a liver transplant at Mass General in Boston, which is my hospital of choice. I now go there for everything except my PCP.

I realize that not everyone lives close to a Mass General or a Mayo, or Johns Hopkins, but if you do have a university teaching hospital within reach then go there. Even if it is a bit of a distance, go there. Your health is worth it. Check the US News report for top hospitals, that's a great source.
https://health.usnews.com/best-hospitals
It sounds like it could be a gastroenterology problem so you could check specifically for hospitals that are well rated for that.
https://health.usnews.com/best-hospitals/rankings/gastroenterology-and-gi-surgery
I hope you will be able to get diagnosed soon. Don't be discouraged if you have to wait for a while for an appointment. That happened to me but they put me on a waitlist and I was called much sooner than when the appointment was scheduled. I hope too that you will let us know how things are going.
If you put my Connect name, contentandwell preceded by the @ I will be alerted that I have a response.
JK

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Replies to "@jc123 Hi, Jon. Welcome to Connect. I went through a similar thing with not being diagnosed..."

Informative and helpful!
Thank you for taking the time to write.

@contentandwell, Thank you for sharing your experience. I actually live in central NC right by Duke and UNC. Unfortunately, I have seen GI and Cario doctors from both and neither have been able to help. I'm caught in a loop where each new specialist I see tells me within 15mins of meeting me that they cannot help me. I'm guessing this is because they've seen my previous testing from previous doctors and feel those results are conclusive.

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