Thank you for all the work you're doing in raising awareness to this rare and often misdiagnosed disease. After not feeling well for a few weeks (no serious symptoms really, mostly just feeling weird after eating, and then ultimately losing my appetite), I decided to go to my PCP. He initially prescribed anti-nausea medicine but also decided to run some lab tests. When I got home from that appointment, I got a phone call from him telling me to go to the ER because my liver enzymes were through the roof. After being admitted to the hospital for scans and endoscopy, I was given the preliminary diagnosis of Stage 4 Pancreatic Cancer. Of course, they were still waiting for the biopsy result, but given what I was presenting at the hospital (mass in pancreas, bile duct stricture, multiple scattered nodules in the lungs), they were over 90% sure. I came home with this life-altering, devastating diagnosis. It really changed my life. I was spiraling. Then came the call a week later that the cancer biopsy came back negative! I fell off my seat and sobbed. Then they told me that they will test the tissue for this condition called, IgG4-RD, but they told me it's very rare. They also told me that the protocol is to do a repeat biopsy for cancer and IgG4-RD. A month later, it was all confirmed as IgG4-RD. I consider myself lucky to be one of the rare patients of this disease. Of course, I take the seriousness of it, but it could have been a lot worse. I also consider myself lucky that I get my care from a good hospital/doctors that they were able to come to a diagnosis in relatively short amount of time compared to other patients' journey.
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Thank you for all the work you're doing in raising awareness to this rare and often misdiagnosed disease. After not feeling well for a few weeks (no serious symptoms really, mostly just feeling weird after eating, and then ultimately losing my appetite), I decided to go to my PCP. He initially prescribed anti-nausea medicine but also decided to run some lab tests. When I got home from that appointment, I got a phone call from him telling me to go to the ER because my liver enzymes were through the roof. After being admitted to the hospital for scans and endoscopy, I was given the preliminary diagnosis of Stage 4 Pancreatic Cancer. Of course, they were still waiting for the biopsy result, but given what I was presenting at the hospital (mass in pancreas, bile duct stricture, multiple scattered nodules in the lungs), they were over 90% sure. I came home with this life-altering, devastating diagnosis. It really changed my life. I was spiraling. Then came the call a week later that the cancer biopsy came back negative! I fell off my seat and sobbed. Then they told me that they will test the tissue for this condition called, IgG4-RD, but they told me it's very rare. They also told me that the protocol is to do a repeat biopsy for cancer and IgG4-RD. A month later, it was all confirmed as IgG4-RD. I consider myself lucky to be one of the rare patients of this disease. Of course, I take the seriousness of it, but it could have been a lot worse. I also consider myself lucky that I get my care from a good hospital/doctors that they were able to come to a diagnosis in relatively short amount of time compared to other patients' journey.
Took my whole life to get diagnosis. 32 years.