APS stands for Antiphospholipid Syndrome, also known as Hughes syndrome, or my favorite, sticky blood syndrome.
APS is an autoimmune disease where your body builds antibodies against components of your blood, making you highly ceceptable to clotting or stroke. It's honestly pretty scary stuff. Whenever I tell people that I have APS and Lupus, people automatically go "oh you have Lupus? I am so sorry, what a horrible disease!" Well honestly I am a lot more scared of the APS. The general public, even doctors, seem to be not too familiar with the disease. To me having a stroke is pretty much my worst fear, and a very real fear to have, because let's be real here, it very well could be my future. I'm just not into being all 'Debbie Downer' and telling people ya I'm probably going to die of a stroke, no biggie, but it definately is something that is on my mind.
APS symptoms are so broad, it is often hard to diagnose because it mimics other more well know diseases. In my case, I swore that I had MS. A few weeks after Miller was born I was still in the hospital because my c-section had gotten infected, while I was there I started getting a sharp pain that would run down my left arm. It would come and go every couple hours but it was bad enough that I told a nurse, and she just stared at me and kinda ignored my concerns. My first week home I had an impromptu baby shower because people felt bad that Miller was born so early and was in the NICU, while in the kitchen waiting for people to arrive, I all the sudden got dizzy and went completely blind. It lasted maybe 10 seconds but I felt just out of it and went upstairs to lay down. I put on a happy face but was miserable and finished to baby shower without realizing how serious my symptoms were. 2 more months went by with me getting dizzy, double vision, having sharp pains down my left arm, getting tingling sensation down one side of my face, and the worst, losing the upper half of my vision in my right eye at least 7 times a day. When my insurance finally went through, I went to my GP with a list of symptoms, he immediaty sent me to a neurologist. The neurologist was very concerned and thought possibly MS too because all my symptoms fit the bill, I had 3 different brain MRIs done and all were clear except for "peculiar white spots that you see in very elderly people" uhhhhh great! I had a nerve test done in my arm where they stick a needle into every one of your muscles in your arm and shock them to see how they react. That was clear, so finally my doctors did some blood tests. He tested my ANA, blood clotting components, and sjorgens antibody. I had a high positive ANA meaning I probably had some sort of autoimmune disease. My blood clotting components were through the roof on multiple levels, he sent me straight to a hematologist because with numbers like mine I was at a very high risk for a blood clot or stroke, yikes! Also, I tested positive for the sjorgens antibody but wasn't as concerned because I didn't think I was showing any symptoms, at least not yet. I felt good to have someone show some real evidence that I had something wrong and I wasn't going crazy.
Unfortunately, my hematologist was a total joke. Apparently I was the first person he had ever actually seen with APS since med school, so he didn't know what to do with me. He put me on Coumadin and referred me to his professor at USC, Dr. Leibman, head of hematology. I also was referred to a rheumatologist since my symptoms were so broad. The rheumy discovered that I was having symptoms of Lupus my whole life and I never knew, I would complain about arthritis when I was 12 and thought that was a normal thing. I was always feeling run down and my friend would get mad because I would ditch out on them because I was always sick and in pain. I got labeled the hypochondriac flake by most of my friends but I was a little relieved when I found out I had Lupus because it was finally a reason to why.
When I saw Dr. Liebman, he explained everything to me and made me feel a lot better, pretty much the symptoms I was feeling were mini TIAs or blood clots running through my brain and arms causing all these problems. So scary! Being put on plaquenil and blood thinners should eventually clear my symptoms but in the future they might need to mix things up because the disease is different for everyone.
He was right, 3 months later my symptoms were slowly diminishing, but the plaquenil made it so I had to see an eye doctor every 6 months because the medication, although a miracle drug, causes macular degeneration and I could eventually go blind, yet again!
On a side note it's always fun when you go to your rheumy, hematologist, and Coumadin nurse and every single one says "You are one of our youngest patient here." Awesome. I feel like I deserve a prize for being so unfortunate.😒
So here we are today. My APS symtoms are under control for now, the true test will be after baby #2 is born, when my hormones go out of control and effect my body. I will be on lovenox injections 3 months after delivery praying that my symptoms don't return.
