I was wondering if I could ask for your thoughts. I had an illness about a year ago where it felt as if my whole body went berserk, and I still don’t understand what happened to me. I had a history of a lupus like illness--photosensitivity, arthralgias, low grade fever, weight loss. After a few years of flares of this sort, I started to get MS like symptoms. I had some foot drop and some strange episodes in the heat. Once I woke up on a hot day and was blind until I cooled off. Another time my entire leg went numb in a sauna. My leg would often feel heavy. My blood tests were mostly negative for lupus, but I had a positive skin biopsy. I had low titers of ANAs occasionally, and once was told I had an antibody to RNA. I was fortunate enough to find a rheumatologist who tried me on plaquenil, and it just did wonders for me. Most everything went away. I still had muscle pain and problems sleeping, so my rheumatologist thought I also had fibromyalgia. I also started getting severe migraines. I did a trial of discontinuing the plaquenil and they migraines got worse, so I went back on the plaquenil. After about 7 years I quit plaquenil and seemed about the same, but I was still having bad migraines. Years went by in which I did relatively well except for migraines, frequent colds and viruses, and fibro like pain.
I moved and stopped seeing a rheumatologist, but my PCP where I live wanted me to see a rheumatologist. She tried prednisone just to see if the fibro-like pain would respond to it and it helped very much. I started having some chest pain, which she thought might be pericarditis and told me to go back on prednisone. When I stopped the prednisone, I had an episode of severe chest pain. The cardiologist didn’t see obvious pericarditis, but said that it sounded symptomatically like pericarditis, and sometimes it happened that nothing much would be seen. (There were some EKG changes and mild insufficiency). I went on methotrexate, which helped a great deal with pain, but had side effects, so I quit. Afterwards I had a wonderful remission, especially from pain, but I still had some exhaustion. I also had chronic sinusitis that I was attempting to treat without antibiotics.
I hadn’t had much problem in the sun in the last, so I was not very vigilant about sun exposure. At the end of summer, I spent two days in the sun and was suddenly struck with the most profound exhaustion I ever experienced. My temp went up. Pain started up in my hips and back. I also got very severe abdominal pain. Then I started getting neuro symptoms--tingling in my legs, and very bad brain fog. I was having trouble speaking. I couldn’t remember how to use my computer, when I am usually everyone’s tech support. I couldn’t read, do simple math, and I couldn’t remember anything from one moment to the other. My left leg went wonky. (Ataxia?) My limbs started visibly twitching. And I was having trouble speaking at times—word finding. And I couldn’t find any medical help. Apparently the doctors near me thought I was just having some kind of anxiety attack. Finally, I went to an ER in the city and had a seizure. I went in the neuro-ward, where they saw the seizure on the EEG. They also gave me heparin just as a preventative since I had my head hooked up to the wall. Apparently, I perplexed everyone because my seizures disappeared too quickly—and they treated me as if I faked the seizure, even though they had seen the seizure on the EEG and visually. My blood tests showed an elevated ESR, CRP and very high lactic acid, but the ANA and anti-DNA was negative. They only did the VDRL for APS and that was negative—like it has always been. My spinal fluid was negative. The MRI was normal except for some “shrinkage.” The doctors behaved as if I had faked the seizure, and gave me the bum’s rush. Besides just getting over a really bad encounter with the medical system, over the past year I kind of kept wondering why I was better in the hospital than I had been the weeks before I entered the hospital. I was talking normally, and remembering things. After awhile they told me I could quit taking the heparin and I did, and my abdominal pain came back.
In the summer though, I started to get pain in the nerves of my legs and arms that seemed to get worse after sun exposure. Finally, I just went back to my old PCP who has known me for 30 years. He drained me of blood. Again ANA, & anti-DNA--negative. A whole lot of neurological antibodies were negative. But I had a positive anti-myelin igg antibody. I started trying to figure out what the anti-myelin antibody meant and I came across Hughes Syndrome. I felt like Dr. House—well this just explains everything! Since my old PCP was a prodigious test taker, I wonder if he had tested me before for the test mentioned on the Hughes website. I found that in 2000 my cardiolipin igg was 8 which was considered negative by the lab. I told my neurologist about the heparin and the anti-myelin antibody. I think he thought I was totally mad, but said well, take aspirin. So I did take one 325 aspirin a day. Much to my surprise the pain down my arms became significantly better. Another really unexpected thing was that I had been having abdominal pains that I thought was really bad gas, but that also went away with aspirin. And I’ve been mentally clearer.
But the thing is I haven’t had blood clots, although sometimes I had wondered if I had a blood clot because of localized pain in my calf. But it was never bad enough to go to a doctor, and the pains went away on their own pretty quickly. So I did finally get to a new rheumatologist and she is a specialist in APS. She told me that my cardiolipin wasn’t high enough, and the heparin doesn’t work like that. Also, she said I had inflammation and APS doesn’t cause inflammation. She didn't exactly diagnose me, but did put me back on plaquenil. Although I haven’t been on it long, it seems to be helping the sciatica in my legs. I keep taking the aspirin, since it seems to be helping (I’ve been self-treating myself for pain with Advil for many years.) I do consider myself lucky, since if I do have lupus, it is relatively mild. And if I have APS it must also be relatively mild. But whatever I had a year ago was just scary. And I have spent so many years of one doctor saying one thing and another saying something else, I’d really like to know what he heck is going on.
I asked my PCP to take the tests that are listed on the Hughes site, and the results were cardiolipin IGG-8, cardiolipin IgM-2, cardiolipin IgA-7. The lab says this is normal. For the dRVVT TEST 31.4, dRVVT CONFIRM 29.1 (which is labeled low by the lab), and the dRVVT RATIO 1.08 (normal again). My INR was 1.0.
In my mind it seemed as if the sinus infection somehow triggered photosensitivity and a lupus flare and at the same time APS? I have never been pregnant, and I haven’t had a blood clot that I know of. Maybe I should just believe the doc, but my reaction to aspirin and heparin, really have me wondering.
Sorry for the length of this, and if you have read it many thanks.