My Antiphospholipid Antibody Syndrome (APS) Story

I have had a long battle with Seronegative APS (SNAPS). I was finally diagnosed in 2002. It is formally documented in my records as Thrombophilia with clinical features of APS. I also have Thrombophilia secondary to Lipoprotein(a), Livedo, Raynaud's and Lupus.

My problems started out in grade school when I developed Fifth Disease. After that I started having problems with headaches and bloody noses. In high school, I got the Epstein Barr Virus (EBV) and never have been the same since. I had dizzy (vertigo) spells most of my high school and my first parts of college. My blood pressure would spike during those times. I would have problems seeing, speaking and walking, my body would twitch and I would have these horrible headaches. I was told that it was anxiety and that I didn't want to be in school. I was an A/B student. From 1985 to 1992, I really wasn't feeling well at all. I got a reprieve and finished my degree in Public Health Education and started getting active with the US Coast Guard & Auxiliary in hopes of being accepted into Officer Candidate School. But in 2000, I started having more neurological problems and unfortunately, was forced to stop pursuing the dream of being an Officer in the US Coast Guard.

It started again one summer night in 2002, I had a TIA (transient ischemic attack) with an amaurosis fugax (temporarily loss of vision in the eye). The ER felt it was a "complicated migraine", as I was "too young to have these kinds of problems". They started me on aspirin and I stopped the birth control I was taking as I sensed there was a bigger problem at play. Two months later I ended up in the hospital with a DVT (Deep Vein Thrombosis). I was started on Coumadin® and after much trial and error my therapeutic range was set at 2.5-3.5 because I managed to re-clot on Coumadin®. In 2006, I was placed on Plaquenil® as that was becoming a standard treatment for APS and with the Lupus symptoms; it was a win-win situation. I still have TIAs & feel like I am clotting despite having a therapeutic INR and being on aspirin and Plaquenil®.

I have also had a heart attack. The ER thought it was "acid reflux" and sent me home. After not feeling well for two months, I finally pushed for an answer and they did a perfusion study of my heart. They found a previous posterior MI (aka Heart attack). One and a half years later, the angiogram shows my arteries clear so of course it was "acid reflux" in their eyes and that perfusion study must have just been wrong. It was ultimately decided that I may have Cardiac Syndrome X. Other than the supraventricular tachycardia, the occasional run of PVCs & PACs and mitral valve prolapse that has gotten more pronounced over the years; it is ok. My kidneys give me problems with decreased kidney functions and protein in my urine but is always blamed on something else or dismissed. I guess it isn't bad enough in their eyes, yet.

Getting doctors to listen to me and take me serious has been a battle, especially in the ER. I never got a full clotting panel until I started pushing for answers. That is when I got one positive test that was "equivocal". Because of this, I started a medical symptoms journal to help track my symptoms, INR and any other patterns I noticed.

I also started a photo journal for the times that my face is drooping but I know by time I get to the ER or call 911 and actually get seen it will be better. I have shown these pictures to my neurologist who said that yes that is a TIA that is triggering the migraines, specifically verterbrobasliar TIAs. The pictures I had been taking helped save me and get the diagnosis. The neurologist also felt what I was having in high school and college were TIAs, not the panic attacks or complicated migraines they thought I was having. I also take pictures of the various rashes that I get. Those pictures have also helped me get on Plaquenil®. They have helped me get better treatment options from my dermatologist. I have the left sided weakness & balance issues, documented by an independent physical therapist, which are consistent with her 80+ year stroke patients. That specific therapy session was actually a good day for me physically, if that says anything. Sadly, the verterbrobasliar TIAs are building up have caused hearing loss and they suspect is causing the increased loss of balance.

As time has gone on, my Raynauds/Livedo has gotten worse. My headaches & vertigo come in go in streaks. The neurologist, ENT and GP have decided the vertigo was a microvascular issue many years ago. My guess is that it is connected to the Raynauds/livedo which is also microvascular. I have problems with cystitis that seems to only come with a flare. The urologist feels this is due to microvasuclar changes in my bladder from my autoimmune & clotting problems.

Looking back, I was never really healthy. I always had some sort of cold, some sort of ear infection, always taking antibiotics or Dimetapp. I was always tired and just never could keep up with my classmates. I was always cold and would turn all these funny shades of red, white and purplish/blue. At the time, we just thought I got frostbite easy. I never really did ok in the sun. I got "sun sick" very easy. Now I wonder how long I really was sick.

This is my "new normal". I have learning still to keep fighting and pushing for answers and to keep listening my intuition; my gut feelings are generally right on. But in the end, I am told there is nothing more they can do for me.

There are times I think I can get back to normal. But every time, I start getting back to my old "normal" or picking up my pace my INR drops or something else happens. I just wish I could predict how I will feel later on that week or the next day, etc. Pain, vertigo & fatigue are my biggest problems and these recurring TIAs. APS & Lupus makes it very hard to hold down a paying job and live a normal life.

I can no longer do contract work or teach EMS classes because of memory & health issues. I just go with it day by day do lots of volunteering.