ALS Support Community

Exactly what I said about my “early presbyesophogus” but the doctors just minimized it as I’m getting older. Lol. This is why I’m on neurologist #6. No. I don’t believe you can post any links at all here.

Well I didnt even realize that there was something called axial onset ALS ..... now Ive fallen back into the anxiety hole.... seems more and more like what I have going on

I believe thats an even rarer form of an already very rare disease. What makes you think that?

I know! So my main symptoms are back neck weakness that has now moved to the front neck muscles ..... the last week i have basically developed pain where all the neck muscles attach and originate. My guess is the neck muscles are becoming weak and putting strain on the tendons which is causing the pain.

And I have muscle fatigue throughout my abdominal muscles.

left shoulder and upper back pain .

Im also guessing that the pains are due to atrophy, I see it in my neck especially and left shoulder given im not a lefty so its not dominant shoulder or arm so I have to see how it develops. Ive read that atrophy causes pain due to the other surrounding muscles compensating.

If you look up axial onset it affects the trunk to include the neck. I dont have any bulbar symptoms and EMG was good on bulbar so Im thinking axial onset . I HATE thinking this but like you its hard to find another answer, especially pouring over literature day in and day out.

But whats confusing to me is the EMG was completely normal on multiple areas of neck as well as upper back even though when it was done I had already noticed atrophy and had major perceived weakness in those areas.

Yeah. I know it can all be really confusing man. Just in my opinion, I don’t have much faith in the statement that an EMG can’t be done too early. I’m banking on that being.

true though, as that’s the only thing that points away from me having PMA, but with two totally clean emgs at 2 and 4 months into twitching and now at EMG 5 at 18 mos and I have active denervation in one muscle and chronic in 4 muscles, I’m not sure what to make of it. Plus I have atrophy and twitching outside of the leg that the EMG isn’t even detecting.

Hmmm so first EMGs your only symptom was twitching?

I had some slight weakness in both thighs I felt when climbing stairs and rising from a chair and some pain and tightness in my neck and shoulder blades areas as well as a weird swallow and my thighs and shoulders had atrophied. I still, 21 mos into symptoms have no clinical weakness though upon manual muscle testing by the neuro. I regularly exercised at the gym though prior to

all this starting, so I opine that I had a strong baseline. At the time of my first two EMGs though, my predominant symptoms were wide spread twitching. That’s what was worrying me the most.

I asked them politely to leave my original thread open so I could come back and update everyone down the road upon my next emg(s), but they were basically rude when I asked them to leave it open and then locked my thread.

And what do you know, my denervation got worse between EMG 4 and EMG 5.

Man that is really confusing .... I had the same experience with the threads. I just posted another one in the hopes that someone would be able to point me in a direction as to what to do next since my symptoms seem to be progressing and got shut down as well, its their prerogative though I guess.

Basically clean clinical and clean EMG means no ALS. I get the rationale and it makes sense but then whats the explanation then. Ive read that if you have upper motor neuron issues that an EMG would come out clean but if you have lower motor neuron issues it wouldnt and when lower motor neuron comes into play then you would have issues in the EMG.

I think Bulbar and lower motor neuron issues come out on an EMG pretty quickly. looked into axial onset though and it looks like most of the symptoms are due to lower motor neuron issues so should theoretically show up on EMGs early. Also I have seen more posts where people are diagnosed based on EMGs where there was no question that something was wrong from the get go.

But still begs the question what is wrong then. We all have something going on its just not ALS is what the mods here are saying even if it be some other disease that often times might be just as bad.