Unilateral progressive atrophy.

[Anton]

Hi all, sorry to be posting here again.
My previous post was closed: Concerned about bulbar onset.

So time have passed I've been followed by a neuromuscular expert with several follow ups.
I've had another EMG done only in Right Bicep and Right Thigh.
Fibs and Polyphased in one location only i Biceps - classed normal. After this result they concluded my follow-ups.
My main concern is that I have atrophy although somewhat mild which have been ascending from my leg to now include every muscle on my right hand side up to my jaw. I have twitches never caught on either of my two EMGs, i have knee, hip, lower back and now shoulder pain.
The experts acknowledge the atrophy on my leg. But seem to believe the rest is in my head.
Which it is not, my physiotherapist agrees with me on this one.

Now a month'ish after the last EMG my shoulder issue have progressed and i have pain in the front of the muscle and it is clearly atrophied now.
I'm trying to apply for insurance before any diagnosis but they are taking forever.
At this point I am almost certain this is ALS, and I'm devastated for my kids and girlfriend to undergo this tragedy.

I've investigated as much as I can on what it could be if not ALS, but nothing seems to fit the bill.
The weird thing is i have no actual loss of function.
I have muscles that tire really fast on my right (Symptomatic) side, especially proximal muscles.
I have twitches all over also in my tongue.
I get winded really quickly.
I have a bit of weird swallowing and talking.
I have atrophy on all muscles on my right side, including face, neck and trapezius. Some muscles more that others.
I don't know what to do, the shoulder and jaw involvement and the clear atrophy on my shoulder just gutted me.

So two questions please:
1. An EMG result from an expert done in right biceps in three locations where one location only shows fibs +1/de-tri-phased +1, called normal, how would this match up with my atrophic shoulder if it was ALS?
2. Is it even possible for ALS to progress as minor progressive atrophy over the course of almost 3 years and not be more evident on my EMGs?
Because I'm signing for insurance i cannot ask my doctors at the moment.

 

[KimT]

Have your swallowing symptoms progressed? People on this forum, with a few exceptions, base their opinions on personal experience. That means they are not qualified to render a medical opinion.

EMGs identify lower motor neuron involvement. If you’ve had a recent EMG deemed normal, that should clear you from an ALS diagnosis.

After you get your insurance, work with your doctor. There’s no substitute for a thorough clinical exam. Also remember that there are many things that can cause your symptoms.

Nobody here can answer your two questions with 100% certainty.

 

[Anton]

First, thanks for your reply.
Swallowing issues is on-off through the years. Which i know is inconsistent with ALS as i understand.
They were worst in 2019. Went away or I got used to it. Returned this year.
I've had one episode of a involuntary jaw clench back in 2020.
Now i mainly swallow alot of air when drinking liquids and have a hard time swallowing phlegm.

 

[affected]

My comments don't change from what I was saying nearly 2.5 years ago. I will only add that I am stunned you are chasing ALS this hard without any failure of muscles. Please get help, but this is not the appropriate place for it.

Just stop for one moment - imagine how this is for us that after 2.5 years, when so many of our PAS have died during that period, you decide to return here and try to convince us, without any actual failure symptoms, that you have this same terminal disease.
I strongly suggest, most respectfully, that you print this thread of 4 messages and take it to your doctor and say - please help me.