So it has taken me 3 ½ years and nearly 2000 miles to finally be diagnosed and treated, despite going the best hospitals in NYC. I went to see Dr. Jill Schofield in Denver, CO this spring.
As some of you know who have read my earlier posts, I became severely ill in the end of 2012. After 3 weeks of severe stomach pain and a nervous system that had gone really, really wonky, I had a seizure in an ER in NYC. They had no answers and so treated me as if I was a psych case, even though I had been previously diagnosed with lupus. They did put me on heparin to put me on a continuous EEG. I revived in the hospital, but it wasn’t noticed, since no one really spoke to me even though I was there for 10 days. After being ill for months after I left the hospital, I collected my records, and brought them to my former PCP, who because he is an old guy took an old test, and found I had anti- myelin antibodies. (He also apologized for the doctors who had been treating me. And being plain spoken called them “idiots.”) After my PCP found the anti- myelin antibodies, I researched and researched (I used to work for a health magazine and had been a magazine researcher), and I discovered the Hughes Charity website, some articles by Dr. Hughes, and this Hughes forum. After I read the first article by Dr. Hughes, I was pretty sure I knew what was wrong, especially since I’d been wondering for months how it was that I got better in the hospital when they hadn’t treated me, except for giving me heparin, which no one thought was a treatment, just to prevent blood clots, which according to the tests they gave me I didn’t have.
I then looked up APS specialists in NYC. When they did the basic tests for APS, at my request, they came back negative, and I discovered that they didn’t believe in “sticky blood” or doing a heparin trial, even though I had already had an accidental heparin trial, which worked. They did put me back on plaquenil, which had worked very well for me when I was younger, even though I was ANA negative at the time, and later on a low dose of prednisone, both of which have been a help. Earlier, when I had told my neurologist that I thought I had APS, he said, “take aspirin.” I don’t think he believed I had APS, but I was having bad nerve pain in my arms, which then got much better after week. I had to leave that neuro because of the health care changes in the US, but none of my doctors ever told me to stop taking aspirin even though they didn’t believe in seronegative APS.
Through the Hughes Forum, I found Dr. Shofield, but I had to wait until my disability case was settled and for her to have an opening after that. Dr. Shofield told me she believed in seronegative APS and would be willing to do a trial with anticoagulants. When I went into her office she told me she was going to test me for secondary APS antibodies. She drained me of blood and did many, many blood tests (which was just fine with me). I think to both our surprise, I came back with a borderline Lupus Anticoagulant, and positive to Phosphatidylserine AB – IgG. Since I haven’t had a blood clot or a miscarriage, she is calling it APS positive, instead of APS only.
But she has also put me on Eliquis and Plavix. I had been short of breath, so I was given various scans and tests for that, but no blood clots were found. She mentioned the possibility of microclots affecting my lungs. My breathing has indeed improved since being on the anticoagulants. My speech, my concentration, my ability to read and write, and my headaches have also improved greatly. She found my balance was off, and that also is better. Even some of my aches and pains have improved. And I feel better in general. Strangely, I’ve lost about 14 lbs. (If anyone has any ideas about that, please let me know.) She also diagnosed me with Sjogrens, and I still have UCTD with photosensitivity. I don’t have any side effects from the anticoagulants, particularly.
I want to thank you all very much for all your work, your support, and for leading me to Dr. Shofield, who is wonderful. Also, my thanks to Dr. Hughes who has put out so much information that is not behind a pay wall and accessible to people like me, and his valiant efforts to get doctors to consider seronegativity. I just hope that more doctors in the US will have their minds opened. I doubt, I am the only person who could benefit from anticoagulation, and don't understand at all why they refuse to even try it. I also hope that people who come into hospitals with seizures and a history of autoimmune disease will have APS considered and tested for.