Worried after seeing neurologist today

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Jody422

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Hi all. Looking for some advice. I saw a neurologist today and explained my main symptom. Weakness in my quads. It presents as legs shaking when i walk down stairs. It has been going on for about 9 months. She says she can see marked bilateral weakness in both legs. While i was sitting on the bed/chairs with my legs hanging over, if I raise the knee and leg straight upwards they start shaking and are weak. If i lift either foot on the heel or toe the foot or calves start shaking. She said “I wont bs you, als is a concern “. But then told me other things that are not pointing at als such as symmetrical weakness. Im waiting for them to schedule me a MRI of thoracic and cervical spine. Then she wanted to have me go to johns hopkins for a muscle biopsy because they have a very good muscle pathologist. Following that would be a NCS/EMG. My question is obviously could this be a slowly progressing form or really, if anyone has had a similar experience. I fully appreciate most posts in this forum are not ALS and I mean no disrespect. Thanks for any thoughts.
 

lgelb

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Given the shaking and symmetry, the first thing I'd think about is an adult-onset muscular disorder, likely slow-moving and/or treatable. The reason for a muscle biopsy would be to rule out some of these primary muscle disorders.

If you have lost bulk in the lower legs, flail leg syndrome (which can be sometimes treated with immunomodulatory therapy) is a possibility. There is a flail leg variant of ALS, but I have not seen it associated with effort-related shaking such as you describe.

Best,
Laurie
 

Jody422

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Thank you for your insight! Cute cat. Im sure it’ll be a month or two until all those things can be done, if I’m lucky. I’ll update then.
 

Nikki J

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Scheduling a muscle biopsy before an emg makes me think that ALS is not near the top of the differential. Most of us never have muscle biopsies in our workup. I would think your neurologist is looking for a primary muscle disease such as Laurie mentioned.

good luck. Let us know how it turns out
 
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