Progressing Symptoms (Weakness in Right Calf and Forearm + Twitching)

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BuckInNyc

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Hi,

I’m a 30yo male who has had twitching for 4+ years and progressive weakness in my right forearm and calf over the past 1.5 years. I’ve had clean EMGS (2016, 2018) from two separate neuros and have set another EMG for next week. I recently saw the neuro in November as a follow up from 2018 EMG. Although I told him about the progressing weakness, he told me another EMG was not necessary as the regular neuro test was normal and I wasn’t showing signs of clinical weakness. He measured my calf and forearm and mentioned the right forearm and calf were slightly larger than the left (which is very frustrating because I can see how my forearm muscle has atrophied slightly), another reason not to have another EMG, but said “if you want peace of mind, schedule another EMG” which I have scheduled for next week.
The twitching has been bilateral in places all over my body, but 90% of the times I twitch have been exactly where I see the atrophy in my right forearm and calf. Through my research I know that twitching usually comes after the deterioration of the motor neurons, so I’m perplexed as to why it seems to be flipped for me. I continuously test my right leg strength vs left leg strength, and although I’m able to flex (stand up on my toes like regular calf exercises), there just seems to be less of the muscle being used on the right side. I’m right sided dominant so it’s not making sense why the right side feels weaker.
Thinking about this has been so taxing on me over the past couple years and it hasn’t seemed to get any better.
I’ve seen all the stories of clean EMGS transitioning into dirty EMGS, so I feel another EMG is warranted. If this EMG comes back being clean Does anyone have any advice as to if a second opinion is warranted? To my knowledge this neuro is not an ALS specialist, so I’m unsure how much I should trust the results if it comes back clean. Any advice would be appreciated. Thanks
 
Past thread here:

 
Apologies, I wasn’t able to reply to that thread as it was closed.
 
No worries- it just helps people if they have all the posts in one place. It's really helpful and you will get the best answers if folk know what has been discussed before. I'm sure someone will chime in soon.
 
Thinking about this has been so taxing on me over the past couple years and it hasn’t seemed to get any better.
Hi Buck - the thing is it also hasn't gotten worse as you have NO clinical weakness.
You are determined to show the doctors up as wrong and that is your choice.
You have no medical training but are sure you can interpret medical information, again that is your choice.
However I'm sorry we can't go further with you on this. Please understand our members here are actually dealing with the disease and have actually lost bodily function.
Please do let us know the EMG result, but you don't need to post further until you give us that.
All the best.
 
Buck, you would not be getting a second opinion if you dont like what the doctor tells you when he tells you your EMG is clean. It would be your 4th or 5th, I believe. May I ask why you've chosen to focus so intently on ALS when you show no signs? You're the only one who thinks you have it. Docs and the people of this forum dont think you have it, so why? You simply do not have ALS. When will that sink in? That's a very good thing. Be grateful, please.
 
Stop back by to tell us about the next normal EMG, but we are not going to be able to tell you anything but to trust it and your normal exams. ALS does not have the onset that you describe.

Best,
Laurie
 
Really, given 4 years of symptoms, you would either be significantly disabled or dead. The fact that you have 2 clean EMGs 2 years apart also says no ALS. At this point we need to introduce the elephant in the room. You have life altering health anxiety. You have it from multiple neurologists that you have no symptoms of ALS. Now here we are with you asking strangers with no medical background to diagnose you with a terminal illness. And most of us are in the process of actually dying of this monster. We really and truly do not have time to massage your neuroses. Please find a forum for health anxiety and leave us alone.
Vincent
 
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