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Leg Weakness and Mobility Issues

Autoimmune Diseases | Last Active: Jul 7 3:40pm | Replies (58)

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@slkanowitz

Several things stand out in your story. Did you have a Covid test done with the bad cold in Jan? Covid infection can trigger autoimmune disorders. One that fits with your symptoms is CIDP mentioned earlier. It affects the nerves primarily and muscles secondarily. Your positive ANA should not be disregarded considering your symptoms! It shows a potential link to AI diseases and should be repeated and explored further. A better test than the standard tests is the Avise CTD (connective tissue disease) blood test. I would ask rheumatologist for that. Myositis is also a possibility, an inflammatory disease of the muscles. Muscle enzymes should be measured in blood (CK, ALDOLASE,ALT, AST, LDH) and if any are elevated a myositis panel should be run.
The good news is that MS and lumbar disc disease has been ruled out. The elimination process is helpful at getting to an answer. There are special Drs that are neuromuscular docs and that’s who you need. The university or special clinic systems recommended by others is your best bet to find one. In the meantime do keep up with PT, as it will preserve the function you have and help improve it. I would leave no stone unturned in getting a diagnosis as early intervention is key to prognosis and recovery! Good luck and keep us posted please!

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Replies to "Several things stand out in your story. Did you have a Covid test done with the..."

I wish I got tested for covid in January but I didn't because I figured it was just a bad cold. When I get sick, I always am hit hard, so figured it was no different. I looked into CIDP and I don't think it is that because an EMG and MRIs diagnose that, and I had both and they were normal/clean results. Thanks for sharing the Avise CTD, I haven't heard of that before but will research. My rheumatologist said myositis is unlikely, especially since my bloodwork for CK, aldolase, etc came back low/normal. Yes, maybe I need to try to find a new doctor or cold email various renowned institutions and see if anyone is passionate enough/interested in researching my case. I try to keep up with PT, but it leaves me more sore/wiped out after for a couple days after, so it really is a delicate dance with not overdoing it but also trying to build strength. It's ironic since a workout arguably set this all off, yet I'm working out to try to get better. I can do more reps/exercises than when I first got there, so I guess it must be doing something.