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cbhomeschooler

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Learn about ALS
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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!
 
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What tests led them to believe it was Lupus (SED rate, ANA?) What did they give you to treat Lupus and who diagnosed it (neurologist, immunologist?) If some of your symptoms are coming and going, it points away from ALS. "problem with communication" between nerves and muscles doesn't tell us much. Do you have the exact wording on the EMG?
 
2 1/2 years ago, I was diagnosed with RA by the best rheumatologist in CO, but he changed it to Lupus. I had debilitating joint pain that all RA meds didn't help. I have positive ANA, low C3, malar rash, mouth and nose ulcers, hair loss, arthritis, fever, low WBC and neutrophils, lung lining inflammation. Plaquinil (used to treat Lupus) has finally helped ease my joint pain.

I don't have the report of the EMG/NCS, but their findings led them to believe it might be MG. Something was abnormal with the Repetitive Nerve Stimulation, I believe. No neuropathy. I had the Musk and all other MG antibodies done, all negative. The neuromuscular specialist will be re-doing my EMG & NCS.
 
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There is such a thing as antibody negative MG. as you know the lupus makes the MG somewhat more likely. Your symptoms sound horrible but not really like any ALS onset I have heard or experienced among my family and friends. Best of luck in figuring this out
 
MG is also supposed to cause diminished reflexes, but mine are very hyper.
 
As Nikki said, doesn't seem consistent with ALS onset.

However, be aware that there is a regional ALS expert at the University Hospital in Denver, Dr. Ringel.
 
As Nikki said, doesn't seem consistent with ALS onset.

However, be aware that there is a regional ALS expert at the University Hospital in Denver, Dr. Ringel.

I have an appointment with Dr. Ringel on Oct. 20th (though my rheumatologist is trying to get me in with him sooner). Thanks.
 
It sounds like you have had an abnormal NCS, which points away from ALS. Your symptoms I agree do not really sound like ALS (but agree they sound terrible!). Six weeks is a long time to wait with so much going on. Wishing you all the best and some answers. From what you are saying, I doubt it is ALS.
 
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