Weak left knee/thigh/ twitching

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Kchuck24

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Hi,

thank you in advance for taking the time to read this and any help is greatly appreciated.
I have read the sticky’s and they were extremely
Helpful on clarifying information. I have read some PALs personal experiences which has led me to post.

my symptoms started in august 2020.. purely sensory (tingling) which initially made me think vitamin deficiency, stress or maybe MS. I went to my primary and had a brain MRI which was completely clean. Referred to a neurologist who also conducted mri of thoracic and c spine which also clean. I experienced some left leg weakness in my knee that was pretty mild so I didn’t think much of it. I had a NCS of lower extremities and he did emg on right leg which came back clean. So I just accepted it and was going to see how things would go.

the tingling has subsided some but the weakness in my knee has not. Muscle twitches began and it has started getting uncomfortable walking. I am a nurse so after being on my feet all day I can feel my left thigh feeling heavy or stiff. I try to sit and rest as much as possible.

I visited my neurologist again recently and updated him who decided to do an upper extremities NCS/EMG last month which came back clean. They ordered more labs. I discussed the problem in my left leg more and how it has gotten worse along with the twitches so they have decided to just do the emg of my left leg this week.

I appreciate any advice/feedback. Thank you so much
 

lgelb

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Sounds like a good plan to find any progressive neuromuscular condition, but I doubt it will prove ALS.

Best,
Laurie
 
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Kchuck24

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Thank you Laurie. I appreciate your response. May I ask what makes you doubt? I definitely Hope that is the case as well. Thank you
 

lgelb

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6 mos of localized pain/stiffness/perceived weakness. Much more likely a focal injury or lumbar spine issue that wasn't appreciated on the last MRI. I'm sure you've tried this, but I would also see a podiatrist for gait analysis and/or change out your shoes/insoles and make sure you're doing hip stretches, etc. before each shift.
 

Kchuck24

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Thank you Laurie. Just reporting back that I had the EMG on both legs today and they said everything looked fine. Still not sure what’s going on; but I am happy for a clean EMG and will start looking at other avenues! I wanted to say thank you for taking the time to respond to me and everyone’s advice and the forums are very helpful.
 

Kchuck24

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Hi again,

I just have some further questions about UMN involvement. I am about 6 months into symptoms with everything coming back clear so far. I’m concerned about the possibility of what seems like mild spasticity. I felt it some in December where my calves would tighten up. I could still move them around but I’d be laying in bed and could just feel them very tight. That lasted about 2 nights. Now my outer calf on my left leg (problem leg) is pretty much tight all the time. I do have involuntary jerking movements as well when I’m laying down in bed. Sometimes full body jumping or my feet will just jerk.
All lab work, EMGs, brain and thoracic MRI have come back normal. Good news but leaves me in limbo on what is going on.
there is no clinical weakness but I am worried about the possibility of umn involvement. When this started back in august it was all sensory involvement (pins and needles, tingling, little pin feelings all over body, cold feelings). Which I know isn’t typical of MND but I’m still worried with these new symptoms the possibly of umn involvement.
Thank you for any insight or advice
 

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You are not describing spasticity Also it would have been detected on your exam by your doctor
 

Kchuck24

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Thank you Nikki for your reply. Yes I have been told by the neurologist my exam looked normal. I don’t know what all was checked but I did take some reassurance in that. Can you describe spasticity? I see different explanations of it online and I just wasn’t sure.
 

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It is really important that we don't describe symptoms, as people fearing they have ALS then begin to experience them.
Please go back to your doctor and ask to be examined for spasticity, and ask your very relevant questions so they can be answered in light of a physical examination. That is the only way you will find answers.
 

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The jerking you describe when lying down or at rest could relate to something like Restless Leg Syndrome, if it improves with movement. You can ask your doctor -- if that's what it is, there are drugs, as you know.
 

Kchuck24

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When I went to my follow up appointment, I met with the PA who said my EMG was normal and all my lab work was normal. I asked her about UMN symptoms and she did check my reflexes and tested for babinski and clonus which were negative she said. I asked about spasticity and I described what I was feeling and she said I was describing it but can’t say that it is spasticity for sure. She didn’t do an assessment from my understanding checking me for it.

along with my calf tightening sometimes it feels like when I’m walking my quads are tight. It sometimes feel rigid when I’m walking. So I’m not sure how else to describe it or if it’s spasticity. Things just feel tight and rigid at times. But they are referring me to neuromuscular Dr. pulley just to check over everything again.

if it is spasticity would I have hyper reflexes or other symptoms? I’m going on month 7 of weird symptoms with no answer still. Thank you
 

lgelb

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Re-read this thread. There is still no reason to worry about ALS, whether it's "spasticity" or not. The issue isn't giving something a label, it's whether you have a fatal neurodegenerative disease. You don't.

You could have a headache and not worry about something worse, even if you couldn't explain why you had a headache.

As I said, ask about RLS, and maybe also PT. If there's nothing systemic to worry about at this point, test the hypothesis that you can feel better and get the benefit of another opinion as to whether there's something mechanical that can be improved.
 

Kchuck24

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Thank you Laurie. I appreciate your response and all of your help throughout the thread.
 
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