- CASE FILE
Zerp percent platelet function. Bone marrow rejecting iron. Hemorrhaging into my skin. 3 plus years and all docs can say is they don't know.
ABOUT THIS CASE FILE
11.5 years ago, I was diagnosed with ITP. Idiopathic Thrombocytopenia Purpura. I was 21 years old. Most people are diagnosed as young children or in their elderly years. 4 years ago, I felt the symptoms again and went to get checked. Over the past few years, I have seen several doctors and have learned that my body is no longer attacking my platelets. Instead, my body is producing nonfunctioning platelets. I am hemorrhaging into my skin. I am covered in petechia. I am anemic and have iron deficiency anemia. Since last year's iron infusion, my ferriten levels have been off the charts high. Yet, my iron levels are still low. I have learned that my bone marrow is rejecting the iron and not storing any. I have high levels of hepcidin, but my liver levels are fine. I get extreme joint pain, but the doctors say it is unrelated. I am seeing the only platelet research specialist in the state, because I am "out of the abilities" of regular hematologists. However, the platelet research doc said that the only way I will ever get answers is to go to Utah. But I could live the rest of my life not knowing what is wrong or how to treat it. I am so exhausted and it feels like my body is battling itself 24/7. I bruise at the drop of a hat, and the doc just says my symptoms are cosmetic. He does not believe my exhaustion or pain or weakness or joint problems are related to the issues with my platelets.
Two years ago, I experience extreme pain and swelling under my right ribs. The docs thought it was a gallbladder issue, but the surgeon did not want to operate due to my bleeding risks. He doubted it was the gallbladder, because all the tests came back normal. He referred me to a chiropractor, who took an xray. My ribs were dislocated.
Last year, my shoulder/neck area swelled up drastically. It was so severe I went to the ER. They refered me to an Ortho surgeon, who told me that shoulders don't bleed and gave me a cortisone shot. He spent 15 minutes wiping blood off my shoulder, instead of just applying pressure, like I asked. He said it was probably a pinched nerve in my neck and referred me to physical therapy. He never actually examined the shoulder. The physical therapists said it felt like they were working on an overfilled waterballoon. We were all concerned that I was hemorrhaging into the area, but the surgeon refused to order an MRI of the shoulder. He only ordered one for the neck, which was normal. Physical therapy ended, and my shoulder is still swollen and hard to move. It is not anywhere near the size it was, but I think the extreme swelling has permanently changed the way I can move my arm.
I am very afraid that my body is getting tired of battling itself and things are getting worse. The platelet doc says nothing is related, but I know it is... I just don't know what else to do. At one point the doc was excited to possibly name a new autoimmune disease, but then he had a concussion and now all I get is the wait and see. I don't want to wait until it is too late. I want someone to help me, please.
When I was diagnosed with ITP, I was on extremely high levels of prednisone and Aygestin. For 11 years, I was on 1000mg B12, 1000mg Vit C, 65mg Iron, and Multivitamin with Iron. I have had prednisone several times since. I take tylenol on a regular basis, but other than that there has been no treatments offered. I am just supposed to be careful each and every day.