It has been a long time since my last post. The usual busy schedules and health-related maintenance (and holidays) have kept me from writing posts that I feel ready to post. I want to share some of the recent issues I’ve encountered, so this will be my longest post to date (lucky you)!
It should have been just another day…
While I was getting ready for a morning session of a conference in early December, I experienced a strange numbness and weakness. I thought that I was beginning a “fatigue flare” where moving is extremely difficult because I feel weighed down. But something felt very different. There was a weird jelly-like, tingling feeling in my face, legs and arm on the left side.
I figured that I would do my usual ‘lupus-remedy’ shower where I take a warm shower, sit down in the tub, let warm water loosen up my joints and do some self-massage.
It took me a good while to get to the shower and get in. I kept thinking that something felt very wrong. I wasn’t experiencing my usual lupus fatigue. I didn’t even have joint pain or stiffness.
I sat and massaged my legs (with my right hand), all while trying to figure out what I was feeling. It wasn’t clear to me. Was I really numb? Why was my left side feeling different from my right? Was I having a stroke? I wondered and wondered as I tried to bring my body back from where it had apparently disappeared to.
I did a “smile test” to see if I was in stroke territory (utterly useless exercise since I didn’t have a mirror in the hotel shower). I was in there for an hour, including several attempts to get up, but my strength wasn’t there. I literally thought to myself that I needed to somehow create some spoons out of the shower water because I had none. I basically woke up with one spoon, which was spent getting into the shower.
When I was finally able to get out and get dressed, I put on my sports bra because, in the back of my mind, I thought I would need to have an MRI or CAT scan. My intent was to get back home to NYC as soon as possible and get an appointment with my rheumatologist. This, I knew…was not the right thing to do (calling 911 is the right thing to do!) , but I just wanted to be home. *again, don’t do this!*
I made it to the Amtrak station and changed my ticket to leave late morning. As I waited for the train, I called my rheumatologist’s office and left a message with the front desk. About ten minutes later, I was told not to get on the train and to get to an emergency room immediately.
I went, and ended up being admitted to a medical center for them to check me out.
What is going on, doctor?…
After getting through the triage area, I suddenly had another attack of the numbness and weakness I experienced earlier in the morning. I could no longer stand or walk. I was examined for stroke and the doctors were in contact with my rheumatologist. We discussed the fact that having lupus does put us at increased risk of stroke, especially if we have antiphospholipid syndrome.
In order to have the “Antiphospholipid Syndrome” someone must have the autoantibodies and also have had at least one blood clot or pregnancy loss. With respect to the brain, these autoantibodies increase the risk of forming a clot in a large blood vessel in the brain and causing a stroke.
–Dr. Meggan Mackay via “15 Questions – Cognitive issues and headaches associated with lupus” on Lupus Foundation of America: Help and resources page, http://www.lupus.org/resources/15-questions-cognitive-issues-and-headaches-associated-with-lupus
I told the doctor that I’d previously been tested for lupus anticoagulant and anticardiolipin antibodies, and the tests (as far as I recall) were negative.
Everyone was puzzled. I felt like the type of patient that complains of something that can’t be seen. That I’m “taking up space” or a hypochondriac. It’s the kind of feeling many of us go through when we are getting diagnosed with lupus. The doctor did a few different tests: he softly touched various areas on both sides of my body and asked me if they felt differently from one another. He also had me do the “smile test“, open my mouth and stick out my tongue, and tested the strength of all four limbs (arms and legs). There was no visual lopsided issue with my face, but normal strength and sensation weren’t great on my left side.
This is a new thing to keep an eye on…
I had an MRI with contrast of my head and neck to check for any sign of stoke or inflammation in the brain. The tests were clear: no stroke, no inflammation. The doctor told me that I likely had an ‘atypical migraine’. More specifically, a hemiplegic migraine, where people experience weakness and numbness on one side of the body. I didn’t have a headache at the time, but I had been expecting a migraine since I had very tight neck muscles on my left side the previous two days.
When I was released from care, I made an immediate appointment with my neurologist.
The next day…
By the next morning, I was in my neurologist’s office in NYC recounting what had happened the previous day. During my examination, she did a pin-prick test, where she poked specific areas on both sides of my body to see if they felt the same. For example, she used a sharp stick to poke one area of my leg, say on the foot, and then pricked the same spot on the opposite foot. After each prick, she’d ask if I felt it and how the pain compared with the other side. She pricked my face, and several places on my arms and legs. I still had some numbness on the left side, but I was able to move around normally.
I ended up having a migraine headache while I was in the neurologist’s office, including a moment where I couldn’t put words together to speak. The doctor told me that these types of migraines (hemiplegic) could put me at risk for strokes and that I should begin paying attention to my pre-migraine symptoms and take medication to try to stop the migraine from progressing. She also ordered additional blood work to check for clotting factors that I could have. I got them done last week (12 vials people, they took 12 vials of blood!) I’m waiting for those results.
It’s not always lupus…
I usually attribute any weird sensations or things I experience to lupus since I consider it my “primary” problem, and the disease manifestations constantly change. I thought I may have begun to experience the neurological effects of lupus with stroke-like symptoms. Being hyper-vigilant in this way as a person with a chronic illness is probably normal. It is always important to check things out. In my case, it appears that this episode was unrelated to my lupus. I just need to pay some additional attention to these migraines.
I found a pretty good video explaining the cycle of a migraine on a Mayo Clinic page: http://www.mayoclinic.org/diseases-conditions/migraine-with-aura/multimedia/migraine-aura/vid-20084707