It is believed that 40-50% of patients with Lupus also have APS.

The APS Foundation of America, Inc. is the only United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, young strokes and heart attacks. We are a volunteer run, community based 501(c)3 non-profit Public Charity organization and is dedicated to fostering and facilitating joint efforts in the areas of education, support, public awareness, research and patient services. Our URL is http://www.apsfa.org

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 and Raynaud’s.

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 and speaking, 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 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. 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 3.5-4.5 because I managed to re-clot on Coumadin®. However, since being placed on Plaquenil®, in 2006, we have been able to reduce my INR to 2.5-3.5. I still have TIAs despite having a therapeutic INR and being on aspirin and Plaquenil®.

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…elaborate on this. 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 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.

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 (Myocardial Infarction) also known as a heart attack. One and a half years later, the angiogram shows my arteries clear so of course it was “acid reflux” 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 have decided to give me problems but that seems to come and go also but is always blamed on hormones or salt even though I watch my salt intake.

As time has gone on, my Raynauds/Livedo has gotten worse. My vertigo is coming back, which the neurologist, ENT and GP have decided was a microvascular issue many years ago. My headaches are getting worse again too. 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.

My rheumatologist has decided to diagnosis me with a “touch of Lupus”. They won’t call it full Lupus because all the sudden don’t have enough symptoms or my blood work is “ok” again. I guess you need to have everything happening at once to get a real diagnosis.

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.

I guess all of this is my “new normal”. I have learned 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. Vertigo is my biggest problem and now these recurring TIAs. APS 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.