Hello! I also posted this in the dysautonomia forum, but because I have a connective tissue disease (undifferentiated) I thought you guys might have some insight into how lupus affects the nervous system. Thank you for any comments!
I'm 29 years old, and was perfectly healthy until recently! I am thin, don't smoke, and don't take any medications. But for the last 5 months I've been having daily symptoms related to the nervous system. It started about 2 years ago with some tingling in a patch on my back that would come and go, then I had a major "episode" while pregnant with my daughter last year. Out of the blue I suddenly lost my ability to understand and produce speech, felt confused, forgot words, and had the oddest sensations in my body like something was pressing down on me. I got tingling in my arm, both legs, and one side of my face and scalp. My vision was a bit blurry in one eye and I got very weak. I recovered completely after about 3 hours. My doctor ordered an MRI, EKG, and heart doppler, which were all normal so she decided that it was a silent migraine.
I began occasionally having heart palpitations (with no obvious trigger) that would resolve once I coughed. I started getting brief bouts of vertigo and nausea. Then I had a week-long migraine (headache, tingling, vision problems). Swollen hands and feet followed for a few days along with a burning sensation in the backs of my hands. Then in November of 2010 I had an episode where I suddenly became very cold and couldn't stop shivering. My hand and arm went numb and tingly, followed by both legs, one side of my face, my lower lip, and tongue. I felt weak and I kept needing to have bowel movements (at least 5 times within a couple hours) and had a sensation like I needed to pee over and over again as well, though I didn't. I had this weird feeling of something pressing down on me though I was also lightheaded. It's hard to describe. We went to the ER eventually and were given a referral to a neurologist. I recovered after about 4 hours so I thought it had possibly been another silent migraine. But the same thing happened again the next day. These episodes occur about 3 times a month now, but I have other symptoms daily.
I get swollen hands and feet in the morning sometimes, occasional joint pain in my hands/wrists, discomfort and cracking in my neck, heartburn and excessive burping, clenching of my muscles (without trying), sudden flushing or feeling very hot, sudden feelings of cold, muscle pain in my thighs, pressure around my cheekbone and teeth along with tingling (one side only), one-sided headaches, vision changes, etc. I also have polyneuropathy in my feet/legs with lessened vibration and temperature sense and this is beginning in my hands/arms as well. I have "severe vasomotor dysfunction" in my hands and feet which results in them becoming very cold and blue and numb for hours at a time sometimes. I was told it was "like Raynaud's" (not sure if that means it's NOT Raynaud's?!) I also get the opposite where too much blood flows to my extremities and they get swollen and red and feel very hot. Lately I sometimes feel like I can't breathe adequately (not wheezing or short of breath exactly - hard to describe).
I have had a normal MRI (brain, spine) and EEG. My bloodwork showed a positive ANA (1:640 speckled) but no other specific antibodies so we don't know which autoimmune disease might be present. I also had low iron and high blood sugar (getting evaluated for diabetes on Monday). The vascular studies were abnormal, of course. I am starting to take a calcium channel blocker for the blood vessel spasms.
The neurologist thought I was getting silent migraines (acephalgic). The rheumatologist thinks I have some sort of connective tissue disease and that possibly my "attacks" (with the dizziness, cold, shaking, weakness, excessive bowel movements, etc.) could mean that my parasympathetic nervous system becomes overactive sometimes. He doesn't know why, of course. I have been to the ER a couple times since this all started and been told "I don't know" by one doctor and "probably anxiety disorder" by another.
My question is, does any of this sound familiar to you guys?! I would love to talk to anyone who has had similar symptoms, as well as hear from anyone who has dysautonomia related to autoimmune disease. Or just hear your ideas about causes and treatment for this type of dysfunction.