Twitching progressed to lower body spasm

[Dnfm23]

Thank you all for your time as I really appreciate it. I’ll be as brief as possible. Minimal twitching started March 2022 in left leg and after a month started in left arm too. In July 2022 I did an EMG and NCS and both had great results. In august the twitching started on the right side and now it sporadic all over but isn’t too bad. I had learned to live with it without worry. In October I noticed when I wake up and stretch my legs all the way they would spasms and my foot would kick out pretty violently. It seemed weird but I just ignored it as tight muscles. This lasted into January and I just tried avoid a big leg stretch. Now the concern starts as about 10 days ago whenever I wake up, anytime I straighten my legs the whole leg tremors bad. This is in both legs and only when waking up during the night or in morning. Once I’m awake I can straighten my legs with no issues. This feels like a neurological issue as if it was a pinched nerve or muscle then I would think I could reproduce the spasms during the day. Could this be ALS and the twitching just progressed to spasms. Would another EMG be warranted? When I get up in morning my upper legs feel really tired from all these spasms as it wakes me up at least 5 times a night and is really scary. It’s my whole leg that shakes but it originates from the quads/hamstrings. Thank you and any suggestions would be appreciated

 

[affected]

Hi there
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You need to go back to your doctor.
You don't have anything that would remotely suggest ALS, but if you have health concerns that is the thing to do. Your doctor examined you and ordered tests last year. They can tell you what, if any, changes they can now identify on examination and decide what that means.

All the best.

 

[lgelb]

There are several reasons this could happen, including sleep disorders. Fortunately in and of itself, none of them relates to ALS. Please see your doctor and show them exactly what you mean.

 

[Dnfm23]

Thank you for your responses. I apologize for the formatting of my initial post. I am seeing my primary care Dr tomorrow. The spasticity of my upper legs continues to be a concern as it wakes me up every few hours. It’s amazing that once I’m up or walk that it goes away until I fall asleep again. I’ll see if they think it’s a sleep disorder or what it could be. Amazingly I cannot find anything similar on the internet….which is probably a good thing. Thank you again and I’ll only follow up if there’s talk from the Dr that relates to this forum

 

[affected]

Unless a doctor has diagnosed what is happening with your legs as spasticity you might want to stop telling yourself that term. I thought you were having some muscle spasms which is a very different thing.
All the best working with your doctors.

 

[Dnfm23]

I went back to my follow up Neuro appointment and she ordered a thoracic MRI and a paraneoplastic antibody blood test and she said we’ll see about another EMG after those results. I showed Hyperreflexia in both legs at this appt. She said that, the cramping and twitching point to something neurological but too early to say what just yet. She did discuss ALS briefly but said that’s a low possibility.

Last month I had a lumbar MRI that showed mild stenosis which she said is common for my age and her and my sports medicine Dr both didn’t think it would cause the issues I’m having….but that possibly it’s how my body is responding to it. I’m hoping I get lucky and that’s it. I just wanted to see any thoughts on the new Hyperreflexia in both legs and if that could be worrisome. If they do the EMG again, should I ask them to do the same side of the body to compare or the other side so that we’ve covered the whole body? Thanks for your advice

 

[Dnfm23]

My neurologist gave me a follow up call and we’re just waiting on the MRI to be completed on Thursday. Does the Hyperreflexia, twitching and tight cramping muscles seem more worrisome and is it worth pushing for a ‘both leg’ EMG even tho I had a clean EMG last July? Both legs somewhat tight/sore during the day, mainly both hamstrings, and upper leg cramping/waking up every 2 hours when sleeping. Sleep Dr ruled out RLS and doesn’t feel it’s a sleep disorder. Zanaflex and Gabapentin not stopping the nighttime issues. Thank you for your opinions

 

[ShiftKicker]

Hello-

It's really up to your neurologist to figure out what tests to order- including a follow up emg. If they feel the need for one, then they will definitely order it. You might be better off asking your neuro what their thoughts are on another emg because they can explain why/why not.

We are just strangers on the internet who do not have your medical record in front of us, nor have we examined you in person. There are so many reasons for the symptoms you are experiencing. We do understand the worry and need for answers. Thursday is not far off, despite how it might feel. Hopefully you will get more answers then from your neurologist. They really are the person to be asking about your care and directions for inquiry.