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

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@crittercaregal

Bonnie, although your ultimate diagnosis may not parallel my circumstances, your story piqued my curiosity. W/O boring you or others with details, my short version is simply that I have been chronically ill for over 5 years with overlapping symptoms that have yet to be understood. I suffered a rare heart event 2.5 years ago from which my recovery should have been reasonably easy and complete. It was anything but that! Not a doctor, and there have been many, can find a cause for my unbearable, constant chest pain, SOB, unrelenting nausea and nighttime awakenings with chaotic heart rate and intensified chest pain that generally radiates down both arms and legs. Cardiology sends me to GI doctor and he sends me right back to Cardio! So my question is this……since I am at my wits end and cannot get a diagnosis even after many, many diagnostics and trips to every conceivable specialist, I am willing to pursue 'investigation' elsewhere in the country. Whether Mayo, Mass General or Hopkins but how does one get the ball rolling if you don't have a referral or even a grasp of which department to explore?
Any direction would be immensely appreciated as I'm getting nowhere and in a downward spiral with very quickly progressing symptoms.
Thank you so, so much!

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Replies to "Bonnie, although your ultimate diagnosis may not parallel my circumstances, your story piqued my curiosity. W/O..."

@crittercaregal, Some of your symptoms sound similar to mine. I also had a sudden event that started my illness, which had all the symptoms of a heart attack but my Triponin and EKG were clear. After that event I constantly have pain directly below my sternum, is this where yours is as well? I have PVCs that hit so hard it's almost like I'm getting punched. I'm also SOB all the time, especially when laying on my back. Just within the past 4 weeks I've also developed the same nighttime symptoms as you describe. The only symptom I don't have is nausea and the leg pain.

Also this "Cardiology sends me to GI doctor and he sends me right back to Cardio!" describes exactly what I've experienced as well.

If you are thinking of Mayo you would initially ask for an appointment in general internal medicine. After their exam, they will decide which departments to send you on to see.