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.

22 Replies

  • Well done on your personal efforts to get to the end of a complicated jigsaw, we all learn so much off each other, thanks for the lovely feedback. MaryF

  • Thank you, Mary. I know you put a lot of work into "spreading the word."

  • I/we do, it is nice to be appreciated. MaryF

  • So happy you are feeling better. I would have thought you having access to NYC hospitals you wouldn't have to go all the way to Colorado. It's a shame doctors don't listen to their patients more. So happy for you.

  • I did have access to NYC doctors and made use of them. But no one believes in seronegative APS in New York that I found, and no one tested for secondary antibodies.

    Although, I guess to be fair, the no clots, strokes or miscarriages isn't the usual presentation. Although, one of the young fellows encouraged me to see Dr. Shofield, after I sent her Dr. Hughes' articles that seemed similar to my case.

    Thanks, though, Nanny. I hope you are doing well.

  • I also live in New York. My sister has APS TOO. She has clots lost her leg. I have no symptoms clots etc. my sis made me get tested and I tested positive twice for anti cardiolipin antibodies. I was shocked. Drs don't really seem to know Mitch about it though. You a very lucky you found a good one. Stay well fellow New Yorker. It's nice to hear good news for a change

  • Are you taking low dose Aspirin? That would be some protection against clots or other symptoms, even if you feel well.

  • I'm supposed to but I have very bad stomach problems so I'm afraid to.

  • If you take it with your largest meal of the day, it's less likely to bother your stomach. Have you tried that?

  • No but a good idea thanks.

  • You can then try "enteric" coated and it should then be absorbed past your stomach by your intestines.

  • That's such a great ending to your long story, well done you for sticking with it and getting the result you deserve. It just shows that our gut instincts are usually right and that Dr's should always give us the benefit of the doubt.

    I'm really happy for you and thanks for letting us know. X

  • Thanks for your thoughts and support. If you all were not here, I wouldn't have even known that Hughes/APS was a possibility. Or there was a possible treatment for my distressing symptoms.

  • Why oh why is it? that many of us have to do the background work. I have now been given a new Rheumatologist who has put me in the "Too difficult" box. Reading between the lines he is trying to discharge me.

  • If your rheumatologist wants to dismiss you, find someone else. I found out that doctors listen to each other, and not very often to the patient, which can be particularly dangerous to us.

  • That's great news Anny. I hope you're feeling better. Here is a small research article that shows that additional testing for the same antibodies you tested positive for actually revealed three new cases of APS that would have otherwise gone undetected with the standard tests. They might include more antibody tests in the future. I would have not passed the tests if they did not include the Anti-Beta 2 Glycoprotein IgG antibodies. These antibody tests were only recently added to the diagnostic criteria for APS. Also, the first set of antibodies you have attack the nerves and cause peripheral neuropathy. I'm so glad you no longer have shortness of breath. I still have this even with blood thinners. But I think everything in my case is leaning towards CTEPH mixed with COPD.

    Here is the article:


  • Sir CAL--

    It looks as if this is why I had that anti-myelin antibody test. It's a little hard to understand how anticoagulation helps an antibody in your nerves, I guess I have more research to do.

    I hope you finally find the regime that helps you the most.

    Thanks for your support.

  • I have not even set up my blog but wanted to respond to you about Dr. Schofield. She was a God send to me. Someone that actually could connect all my weird symptoms to one thing. Love her! But I called today to leave a message and her assistant said she is gone as of today and the University won't tell them anything. He has hundreds of appointments to cancel. I'm devistated. I live in Denver and there is no where else to go! What do we do now?

  • Oh, this is awful news. I hope she is OK. She had wanted me to text her about how I was doing, and I texted her on this Sunday, and she texted me back. If you find out anything, please let me know.

    She did take our blood tests, so they can't be undone. And the positive results I have had from the meds can't be undone either.

    This is very upsetting.

  • This might sound weird, but I have saved up over three months worth of Warfarin. I am prepared to do battle if they ever cut me off of my meds. I'm ready. lol

  • I tried to text her again via the University's system. It says I have no one to text to. Yikes.

  • It is a yikes! I'm starting with a new PCP in Aug that she encouraged me to do. Hopefully they can manage my med,s. She was more concerned with getting my blood pressure down first. I do hope she's OK?

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