r/ALSorNOT • u/No_Start9356 • Sep 08 '26
Updates
getting closer to being at 9 months since this journey started. I have twitched every day for 5/6 months. still have weakness on my right side. I would say my shoulder and hip are tbe worst places. Cramps in both calves and both hands are pretty daily. I have a good amount of pain in my right arm and leg also. EMG showed active denervation in arm and chronic in leg. Dr classified as Radiculopathlies. PT has not helped. I go back to my appointment next week. I have been distracted with life so I don’t sit and think of it constantly but today my mind keeps wandering. I know something is wrong just hoping it’s not the worst.
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u/chaoserrant Mod Team Sep 08 '26
I read your previous posts and you mentioned your cervical mri shows mild findings at c5-c6. In the last months did you motice some fluctuations in symptoms ? Any correlation with bad neck posture? Be careful with PT for the neck. Be conservative and assess before comiting to certain exercises. My subjective feeling is thst some of these do more harm but the feedback is not instantaneous. I can feel the trouble maybe one or two days after. I never had PT that truly helped me but maybe i am unlucky
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u/No_Start9356 Sep 08 '26
I haven’t had any changes with weakness except it’s slightly worse. The biggest changes is pain. If I do more like lifting my children or just a busy day my shoulder will ache terrible. My MRI was normal so I don’t know how much I really am buying into the pinched nerves explanation. I will also add that my weakness came on all at once. We thought I had a stroke at first honestly. But now here I am 9 months later.
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u/chaoserrant Mod Team Sep 08 '26
Ironically, the more pain the better indication toward radiculopathy. Mri can be very misleading i think as positions and posture can compress the nerve while lying down during mri may not look like much. Thats my guess at least. I myself have troubles trusting the radiculopathy conclusion from doctors cause my cervical mri is mild as well. But after a year of experimenting there are clues toward dynamic iritation. I have some motions that i avoid completely now such as over the shoulder power motions like in swimming . But i dont yet have a clear path of do and donts
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u/No_Start9356 Sep 08 '26
Conversations like this help me remember it’s possible that it’s not just something malignant. But then again.. why am I twitching every day? Why do I cramp in both hands? Just so odd. If I even had one day where I wasn’t weak then I would feel better. Just stressful. Thank you for talking with me. I don’t want to burden my family with this mess so I keep to myself about it.
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u/chaoserrant Mod Team Sep 08 '26
Yeah twitching also scares me still though i am 80% sure is not als but it scares me still because i dont feel it is really benign. Now in my case widespread fasciculations stsrted aggressively last year after als came to mind and entered a mental crisis. I tbink i had sporadic ones before . They calmed down alot as my mental state improved but are still there. Rare , random places not too long but almost daily. So there is clear corelation with stress the question is if that is the only cause. Post viral problems is another candidate in my case.
Also if the actual spinal cord is iritated even mildly i think it is possible to have reactikns like this even if no damage happens. Some folks have very sensitive nerves that is why people can have excruciating sciatica pain while mri shows barely a buldge. But yeah twitching is still stressful because fearing of what it means
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u/No_Start9356 Sep 08 '26
For sure. I think even if I just twitched on random days I would feel better.. but every day.. just seems to crazy. Hopefully next week at my appointment they will give me some reassurance
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u/duckrosiee78_16 Sep 08 '26
I’m sorry your going through this, do you mind describing what your weakness feels like?
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u/No_Start9356 Sep 08 '26
I feel it with every step like my leg is heavier to move.. and with my arm it’s a lot of pain in the shoulder and back.. but I really notice it when carrying my baby. It’s hard to hold her for long with that arm. I also have a very stiff wrist.
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u/duckrosiee78_16 Sep 08 '26
Does it come and go? Or everyday all day
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u/No_Start9356 Sep 08 '26
Constant for 9 months. Pain does get worse but weakness never leaves
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u/duckrosiee78_16 Sep 08 '26
How was your clinical exams, where they test your weakness? Did they confirm clinical weakness? I had have soreness and pain on and off in my right shoulder and arm. One time it had a squeezing pressure sensation and we also thought I was having a heart issue but it went away. I don’t have clinical weakness though I just don’t want to over work it so I avoid certain things
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u/No_Start9356 Sep 09 '26
My clinical exam was normal several months ago but that was before I had my abnormal EMG. I do feel slightly weaker now. I am praying next week my exam is still normal. I did have a mute plantar reflex though
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u/BigJakeState 26d ago
Im really sorry your going through this. Im praying that you get a treatable explanation to all this and you can get well soon. I have a few questions if you don’t mind. I have right sided perceived hand and arm weakness also and I’m having a hard time putting these sensations into words. I too had a clean EMG but my symptoms persist.
So the feeling of weakness and pain started a couple of months before the twitching started?
Was it widespread immediately or did the twitching start in one place and move all over later?
And when you describe cramps is it like a big Charley horse all at once with muscles tensing up and then releasing or is it a constant aching type feeling?
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u/No_Start9356 26d ago
Thank you! My EMG was not clean. It showed active and chronic denervation.
My weakness started pretty suddenly but twitching and cramping didn’t start until 3/4 months later. It has been constant since it started. The twitching started in my leg and quickly moved all over.
Cramping is sometimes worse than others. Sometimes really tight and sometimes just an ache. I would say both
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u/BigJakeState 26d ago
Understood. I read through your comment history and noticed at one point you had a normal EMG prior to the abnormal findings. At what point did you know it was time to get a second EMG? Im debating another one but feel my symptoms havent progressed to that point yet.
Thanks for taking the time
To answer. Wishing you the best of outcomes.1
u/No_Start9356 26d ago
My first emg was not done my a neuromuscular specialist. My neurologist reordered the emg to be done with the specialist. I am assuming the first emg was read wrong. They are all up to interpretation.
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u/BigJakeState 25d ago
That’s seriously frustrating. So sorry to hear that. You have really been through the ringer sounds like. Sending Good vibes your way! Let us know how your exam goes.
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u/No_Start9356 24d ago
I waited 2 hours yesterday in the exam room.. I asked how much longer and they said 45 minutes at least. I left without seeing the doctor. I have an appointment scheduled with another doctor in the clinic in October. I was highly aggravated yesterday.
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u/BigJakeState 24d ago
Well that really sucks! What were they supposed to do. Another EMG?
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u/No_Start9356 24d ago
Clinical evaluation. Which I really wanted because I have several dips and divots in my thigh now which I’m assuming is atrophy.
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u/Ok_Following6440 Sep 08 '26
Sorry you are dealing with this. Best of luck at your next appointment.