Atrophy weakness and twitching with 4 negative EMGs

jianzhuang

New member
Joined
Sep 18, 2024
Messages
1
Reason
Learn about ALS
Diagnosis
00/0000
Country
CA
So for the past 2 years I'm having progressive muscle twitching weakness and eventually atrophy.

My hypothenar muscle is smaller as well as my right arm and leg despite being my most used side.

I'm having breathing difficulties due to the weakness of throat and lung. My friend noticed I was panting during my sleep.

I'm having trouble walking down the stairs and fatigued doing simple tasks like holding my phone.

I still look in shape and it happens to be progressing at a slow pace. I've had a few negative emgs but my neuro has been extremely difficult to communicate with and I'm being recommended to have a second opinion.

I feel extremely stressed I'm only 26 and my body feels like it's failing everyday. I've had negative emgs but it's clear something neurological is going on but I've had no answers.

I'm planning on getting a gene test and a second opinion. Could this be ALS? if not then what.
 
Hello-

Please make sure to read here: Read Before Posting. If your doctor/s have conducted 4 emg tests and examined you and not seen anything pointing towards ALS, then you would have to keep working with them to figure things out. As to what it might be, please read the link and also consider post viral issues. We only know ALS here, so can't really say what the issue is- that really is for a medical professional to help you with. If you do not trust the neuro you are currently seeing, then by all means seek a second opinion. I do recommend you do not focus on ALS, as there are many reasons for twitching.

Of possible interest: Covid19 and Neurological Symptoms

Take care
 
A second opinion is a good idea. What kind of gene test? If you see a genetic counselor and come up with a plan that sounds reasonable. Please don’t do random testing on your own

Pulmonary function testing and perhaps a sleep study might also be helpful

If you have clinical weakness and conformed atrophy an emg should show if it is ALS. There are many neurological conditions as well as other conditions that are far more likely in a 26 yo.

Please don’t try to focus your doctors on ALS as it can often delay diagnosis

Good luck
 
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