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I need help finding a diagnosis. Tumor + POTS
Hi my name is Calli. I have an undiagnosed illness. My junior year of high school I took accutane which led to stomach issues and severe stomach pain 2-3 inches above my belly button. I was told it was anxiety after upper and lower endoscopy. I was told later maybe it’s IBS because I was dealing with constipation. Months passed and was still having issues. Tried a low Fod map diet and even on that diet I was having pain. I was negative for crohns, celiac, ulcerative colitis, and more. I even did a gastric bipass study and came back normal. I had a hida scan that was normal. I then had an endoscopy with ultrasound which resulted in the finding of a benign tumor on my pancreas. They believed this was the issue for my pain. I was not able to eat for days at a time and it was almost like there were “flare ups” and other days I was fine. I got my golf ball size tumor removed partially and a section of my pancreas removed as well. I was told this was my cure. I came back weeks later still in pain. My surgeon was at a loss. They believed maybe I had fluid built around my pancreas due to the surgery and thought about draining it. A week went by and I was in the most pain I’ve ever been in and was hurled over crying due to pain in my stomach. I was taken to the ER which led to a scan showing I had fluid but hardly any to cause pain. They sent me home. The next day I called my surgeon again crying saying something was wrong. This ended in a 3 day stay at the hospital to get the fluid removed and a nerve block. They said once again I would be in no pain immediately meaning it worked. It did not work. Recently, I’ve been referred to a neurologist to test me for POTS. I had COVID right before my surgery as well as had TOS. They thought maybe a nerve was nicked or COVID caused this. I’ve had ongoing stomach symptoms for four years now. I had minor issues of feeling weak and nauseous daily as well as sun intolerance as I play softball. After COVID these symptoms were a million times worse. I have had autoimmune blood tests that came back fine. As of 1 month post surgery, I cannot stand the sun as I feel faint and avoid the sun at all costs, rapid heart rate, heart palpitations, weakness, slurring speech/confusion, and horrible stomach pain. I am being referred to see if it’s POTS but I’m skeptical to see if it’s this. I have flare ups every single day of my life. I took adderall for a point of time and it helped immensely but was taken off of it due to how it could effect my heart. I have never passed out but my heart rate increases heavily when standing. I drink water daily and am a healthy college athlete who is being taken away from her sport.
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