- CASE FILE
The Rare One who is scared she will die without a diagnosis
ABOUT THIS CASE FILE
Hi my name is Erin and I’m 29! I have numerous chronic conditions diagnosed and also still trying to figure out. I’ve been a big mystery for the last few years and most drs give up. I tried Mayo Clinic who wanted me as a patient but insurance wouldnt nudge. At this point I’m becoming afraid that if it’s not figured out i could possibly die. I have hemolytic anemia and have had every single test done to figure out why but can never figure it out... I had my spleen that was enlarged removed in the hopes that it would get rid of my anemia but it didn’t. I just had labs done and all of my blood levels like hemoglobin and hematocrit are all low and my platelets are now over a million. I have also started having fluid that is swelling my body up and a new weird pain in my upper abdomen throughout my ribs and back. I also have methemoglobinemia and low oxygen issues that they haven’t been able to pin point a cause. I also started breaking out into random hives. I have seen tons of hematologists and they have a ran test after test including a bone marrow biopsy and we just hit a dead end every time. I’ve also seen pulmonologists but my pulmonary function test is fine but with still low oxygen.
I am seeing a rheumatologist to try and figure out maybe an autoimmune issue but I’ve hit dead ends before with them too. My Ana is very positive with a high titer and homogenous pattern.
I also have trigeminal neuralgia and interstitial cystitis and severe endometriosis. I’ve had 23 surgeries for my endometriosis since i was 12.