cbhomeschooler
New member
- Joined
- Sep 9, 2016
- Messages
- 4
- Reason
- Learn about ALS
- Country
- US
- State
- co
- City
- arvada
I have another 6 weeks before I get in to a neuromuscular specialist, so I'd love to have my mind eased (or prepared for the worst?).
I am a 41 year old woman. I was diagnosed with SLE (Lupus) a few months ago. Over 4 months ago, I also started having symmetrical severe weakness and near paralysis after activity, tingling throughout my body from my face to my limbs, back, etc. Metallic taste in my mouth. I started dropping things. It has progressed to tremors and muscle jerking, and I have to use a walker or wheelchair to go more than 10 feet. My legs feel like there's a strong magnet pulling them to the floor and I can't lift my feet up and have to shuffle. I improve a little if I literally don't move all day. I was in neuro ICU for 3 days with muscle tremors and twitching, very hyper reflexes (my knee jerk caused jerks in my shoulders simultaneously also), my diaphragm felt tight and had shortness of breath. I lost the ability to speak as my mouth was in a full pucker and my jaw and tongue wouldn't work. My neck can't hold up the weight of my head very well and it shakes "no". A few days before, I had head tremors and very slow speech and leg & arm paralysis. If I tilt my head back, my tongue falls into my throat and makes me snort. My jaw can't handle chewing more than a couple minutes. I haven't been able to set things down gently on a counter for 4 months. I had an MRI and spinal tap that ruled out MS, and was negative for all Myasthenia Gravis tests. No sign of Lupus-caused neurological problems in spinal fluid. My nerve conduction study showed a problem with the communication between the nerves and muscles. CK levels normal. ALS is the worst possible disease I could imagine (and isn't Lupus enough?!), and I pray this doesn't sound like ALS, but I'd love any input. Thank you!
I am a 41 year old woman. I was diagnosed with SLE (Lupus) a few months ago. Over 4 months ago, I also started having symmetrical severe weakness and near paralysis after activity, tingling throughout my body from my face to my limbs, back, etc. Metallic taste in my mouth. I started dropping things. It has progressed to tremors and muscle jerking, and I have to use a walker or wheelchair to go more than 10 feet. My legs feel like there's a strong magnet pulling them to the floor and I can't lift my feet up and have to shuffle. I improve a little if I literally don't move all day. I was in neuro ICU for 3 days with muscle tremors and twitching, very hyper reflexes (my knee jerk caused jerks in my shoulders simultaneously also), my diaphragm felt tight and had shortness of breath. I lost the ability to speak as my mouth was in a full pucker and my jaw and tongue wouldn't work. My neck can't hold up the weight of my head very well and it shakes "no". A few days before, I had head tremors and very slow speech and leg & arm paralysis. If I tilt my head back, my tongue falls into my throat and makes me snort. My jaw can't handle chewing more than a couple minutes. I haven't been able to set things down gently on a counter for 4 months. I had an MRI and spinal tap that ruled out MS, and was negative for all Myasthenia Gravis tests. No sign of Lupus-caused neurological problems in spinal fluid. My nerve conduction study showed a problem with the communication between the nerves and muscles. CK levels normal. ALS is the worst possible disease I could imagine (and isn't Lupus enough?!), and I pray this doesn't sound like ALS, but I'd love any input. Thank you!
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