My AIP Story
This all began August 2017 after starting a new job. I started having severe, crampy, menstrual like abdominal pain that came and went seemingly at random. After a couple of months of this, and multiple Dr. and ER visits, my mother suggested I take an Ibuprophen to get through the work day. Wow!, was that a mistake! Within 10 minutes of taking it my pain was 100x worse and visibly swollen. From that moment on the pain was constant and increasing in severity, causing me to go the ER again. The Drs acted like I was a hypochondriac drug addict and sent me home after running routine tests, that came back normal. I was referred to a GI specialist who thought I had stomach issues and ordered an endoscopy(that was of course normal). After hearing my results I was confused and defeated, and I was beginning to wonder if I was being a hypochondriac. But I knew that what I saw and felt in my body was not normal. Around the beginning of December, my mother called and suggested I try the porphyria diet. So I did, and within 2 weeks I was starting to feel better.
Fast forward to April 2018, I had my first appointment with Dr. Silver, a porphyria specialist. Due to the fact that I vomited the entire 3 hour appointment, and I had a family history of AIP; Dr Silver said he thought I had AIP. I continued to vomit for the next 6 days, with each day worse than the last so I went to the ER on the 6th day.
Dr. Silver oversaw my treatment and Hemin infusions my entire stay. I thought that was it, my attack was over, but boy was I wrong. I had attacks increasing in severity every 2 weeks for the next few months before I saw they were hormone induced. I then began the long process of getting Lupron injections to stop my hormone production. While waiting for Lupron, I had the worst attack yet, this one effected my legs. The pain was so severe I couldn’t move my legs. This happened after I had an attack on the nerves that control my muscles, which left me on the floor unable to get up one morning. I received my first Lupron shot during the attack on my legs, and I also received 10 bags of Hemin during my 14 day stay. The Lupron took 2 months to fully suppress my hormones, and during that waiting period I my worst attack to date. Due to the pain, I was unable to move my own body and had to be moved by others. I also was dealing with the full body swelling that had always been going on but had gotten infinitely worse during this attack.
The inflammation has not gone down since that attack. I am also part of a drug study and have been for months. This drug seems to be helping me recover and end the attack. I am in a wheelchair and have been since the nerves that control the muscles were effected. But I am improving and walking some, and with the support of my family I will defeat AIP!