Concerned about symptoms and looking for guidance

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amdcpus

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Learn about ALS
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Odenton
Hi all, I'm a 20 year old male who found this forum after reading about ALS quite a while. I have read the "READ BEFORE POSTING! Answers to common concerns about possible symptoms" thread quite a few times, but match some criteria and not others.

Symptoms started around 5 months ago, with a constant spasming/shaking/ vibrating in the lower back area. This feeling has slowly spread throughout all my legs, feet, and my entire back, shoulders and neck. This vibrating/tingling/sore feeling is ever present.

I understand sensory symptoms alone are not indicative of ALS. However, I have been experiencing significant weakness and unsteadiness when making movements, such as walking, with a strong feeling of weakness/buckling in the legs constantly. These symptoms are also very prominent in the upper back, shoulder and neck area. They "shake" or feel as if they are buckling often when I make movements with my arms/shoulder, and feel as if they are "buckling" or spasming and are weak the entirety of the time I am walking. I feel my symptoms have been slowly progessing/getting worse since they started around 5 months ago.

I have had urine and blood work done, and nothing has been found in those. I have also had a brain MRI, lumbar spine MRI and cervical spine MRI and all have come up clean as well. Hence the worry for ALS. I plan on seeing my neurologist again as soon as possible in order to ask for an EMG.

Thank you very much to all those reading.
 
You haven't described ALS. It's not a "strong feeling of weakness." It's muscle failure caused by the loss of the nerves that control those muscles. They just don't work any more.

I see that it's going to take an EMG to reassure you, but when you find that you don't have ALS, I encourage you to work with PT or whatever's advised, and to keep in touch with your PCP to monitor any possible systemic conditions.

Best,
Laurie
 
You haven't described ALS. It's not a "strong feeling of weakness." It's muscle failure caused by the loss of the nerves that control those muscles. They just don't work any more.

I see that it's going to take an EMG to reassure you, but when you find that you don't have ALS, I encourage you to work with PT or whatever's advised, and to keep in touch with your PCP to monitor any possible systemic conditions.

Best,
Laurie

Thank you for the answer.

My symptoms have been getting worse and worse. The weakness throughout my body is getting more and more severe. I have severe weakness performing almost any movement, like walking or reaching for something. The shaking is still ever present. It's more and more difficult it feels for my neck/upper back to hold my head up. I'm trying to get in to my neurologist as soon as possible, but very worried.
 
You have not described ALS in the least; it simply does not present as you are describing. Hopefully a visit to the neurologist puts your mind at ease. However, I would highly doubt he would perform an EMG unless you push him/her to do so. The reason is that you do not have ALS symptoms, so poking you multiple times with a needle and giving each poke an electric shock (not fun and extremely uncomfortable) would be superfluous on top of the clinical exam. Please believe them when they say no ALS.

Take good care
 
Thank you for the response, I much appreciate it.

I'm still quite concerned due to the severe weakness/unsteadiness that has been progressively getting worse, especially in my back, neck and shoulders, but hope the neurologist can shed some light on this.
 
Just wanted to post a quick update. I took an EMG today, of my hands, arms and neck. The neurologist didn't say too much, just that there seemed to be an abnormality with the spinal nerves near my C8-T1 vertebra. I will have the final results on Monday.
 
Update: The EMG of my neck, arms and hands was clean.

However, my symptoms do seem more characteristic of upper motor neuron issues rather than lower motor neuron issues, so I'm still worried about the possibility of PLS. The weakness/shaking has continued to worsen. I will be seeing a neuromuscular specialist as soon as possible.
 
Congrats on your clean EMG and, as such, official clearing of you having ALS. Your posts describe a "feeling" of extreme weakness in your limbs. In ALS, weakness, or in ALS, failure- is a lower motor neuron symptom. You clearly do not have that because your EMG is clean.

Again, happy dance for you NOT having ALS. That's great news that you can move on from this forum. Continue to work with your doc, but you no longer need to be here.

Good luck.
 
I see nothing in your description to suggest pls which is an exceedingly rare disease. If you had it the signs would be clear on the doctor’s exam. Please let us know what the neuromuscular doctor says until then kindly refrain from posting
 
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