Which comes first?

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Chuck1302

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Learn about ALS
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Tupelo
In ALS, do you have weakness first before noticing actual atrophy or can you have visible atrophy in an area that weakness may not be quickly noticed such as a pectoral muscle?
 
Weakness precedes atrophy in ALS. Do you have doctor confirmed atrophy? If so what is the plan? If not see a doctor. In 2019 you thought you had atrophy of the triceps and everything turned out fine
 
Thank you Nikki. I have called my neuro and am awaiting an appointment. I have what I perceive as atrophy but my neuro has yet to see it. I'm also twitching more, in my tongue now, and reflexes are very brisk. Also, the normal little jerks while falling asleep have become extreme.
 
Ask about screening for RLS and related movement disorders. You can also video your sleep. Fragmented sleep, whether due to pathologic movement issues or not, can cause sort of an overall hyper-reflexive state.
 
Thank you. I will ask about RLS as soon as I can get in to see my neuro. In the meantime, and at risk of being chastised, I have two new issues that have popped up. First, my right bicep is smaller than my left and I am right handed. It used to be larger, as it should be. When I flex it into a ball it will release a little on it's own without me releasing the flex. When I relax the flex the bicep will relax then move back up on it's own while I'm in a relaxed position. Is that spasticity?

Secondly, my thighs have begun shaking uncontrollably if I'm a bit chilled. Last night I'm getting undressed to get in the shower and the AC is on. I'm not cold, just cool from the AC. My entire right thigh starts shaking uncontrollably and then moves to my left thigh and torso. When I get warm in the shower it stops. When I get out of the shower and in a cool room it starts again. My legs shook so hard in bed last night that they're actually sore this morning. It went on for at least 10 minutes until I snuggled enough with my wife to get warm. I'm almost 50 so a middle of the night bathroom trip is pretty common. Same thing- got out of a warm bed, went into the bathroom and thighs started shaking again.

I'm sorry to keep asking questions but things keep happening and it takes forever to get in to see my neuro. Things have been going on for three years now and I'm just about to my breaking point mentally.
 
Prev thread here: 48 Year Old Male With Tricep Atrophy

Chuck, sounds like it's time to go to your doctor. While you don't list anything that would give a doctor concern for ALS, it's clear you are very fearful and need to speak with a medical professional. The people here simply can not help you with general medical advice or help you remotely track down a possible cause for symptoms, nor does it seem they can provide you the reassurance you seek about ALS. You have probably reached the limits of what this subforum can do for you and it is time to talk to someone who can help you with your ALS related anxiety. While the folk here don't see any link to ALS with your physical experience, it's obvious you think everything is linked, and that is not a healthy place to be.
 
Thank you ShiftKicker. You're exactly right, I am tormented mentally and given that it takes so long to get into neuro you guys are the only people I can talk to while searching for any thread of reassurance. I can promise you this, if I get through another clean EMG my next doctor will be a therapist/psychiatrist to help me deal with this anxiety.
 
Until you get a diagnosis, after 2 years of this going on, I'm afraid coming here for reassurance is really not helpful.
Please, see a doctor and let us know the outcome. There is nothing that would suggest ALS in what you write.
 
I know understand, Affected. Unfortunately it takes a month or so to get into my neurologist where I live. I’m surprised that you say nothing I have written indicates ALS- not that I don’t value your knowledge. From my perspective brisk reflexes, twitches, jerks, and what I perceive as atrophy do bring ALS into the picture. I will also admit, however, that my anxiety is on another level. I appreciate everyone that has responded and I will definitely report back after I’ve seen my neuro.
 
I meant to say I understand, Affected.
 
A month is not that long really - in the meantime you can concentrate on hydration, sleep, exercise, diet, and doing as much that brings you relief from anxiety. Reading and posting here is unlikely to do that.
You already know that the hallmark of ALS is failure. All the things you report could be anything else, could be nothing and could just be your perception.
So please, take control of this month as you will never get it back. Come back, as I suggested and let us know what the doctor says after examining you and running any tests they feel are warranted. Remember not to walk in asking 'do I have ALS'. Let the doctor decide what they find clinically, and what investigations those findings indicate are the next step.
All the very best.
 
I concur with Affected.

Come back after your neuro appointment


Good luck to you
 
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2nd EMG today all clear. He tested my left arm and left leg because that’s what he tested before and wanted to compare. He also tested both sides of my tongue, nothing abnormal. Thank you to everyone that replied, hopefully I won’t feel the need to post here again other than to help people with the extreme anxiety that fear of this disease brings.
 
That's fantastic news! Thank you so much for coming back to update. I'm so happy for you on your good news. The best of luck to you and take care.
 
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