I need help finding a diagnosis. Tumor + POTS — Scope | Disability forum
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I need help finding a diagnosis. Tumor + POTS

callilynch Member Posts: 3 Listener
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. 


  • L_Volunteer
    L_Volunteer Community Volunteer Adviser Posts: 334 Pioneering
    Hi @callilynch

    Welcome to Scope's forum. It is great to see that you have joined us. Unfortunately, we do not provide medical advice (which includes help finding a diagnosis). However, I am sorry to hear that you have been through such a tough time with your health. You will need to remain in regular contact with your doctor and other health professionals involved in your care. In the meantime, we do offer a supportive space where you can communicate with others with similar experiences which I am hoping you will find useful. You can also keep us updated with your progress if you wish. Please know that you are not alone. Additionally, if you have any other questions or require support with anything else, please feel free to let us know  :)
    I have expertise in the following subjects, gained through professional settings such as high level education or employment: autism spectrum disorder, dyslexia, down's syndrome, social, emotional and mental health difficulties, assistive technology and education. Pronouns: She/her.


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