u/Snoodlepoots

Hello,

Original post : https://www.reddit.com/r/ALSorNOT/s/YExQfnyIwZ

Since receiving a clean emg, I am a bit confused as I continue to get wasting in my right FDI despite not twitching there in quite some time. The NCS showed no carpal or cubital tunnel. If you look in the photos (specifically the first), you can see the FDI isn't large enough to fill the adjacent tendons at the bottom in comparison to my left. I'm just struggling on how to read this wasting as anything other than ALS related. Yes, I know clean emg, but was not very thorough. People unfortunately get diagnosed after clean emgs initially. I just did a brain and upper cervical mri and know that if it's clean, I'm effectively doomed. The second neurologist's theory is that I have something like transverse myelitis after an illness I had 2 weeks before symptom onset. She noticed that in the heel-to-shin test, I was uncoordinated. So, she thinks there may be myelin damage. But in order for that to also explain my hand issues, it would have to be higher up in the neck. My index finger has also been wiggling a lot when stretching it or moving it towards other fingers.

https://imgur.com/a/KSXm1o1

Hello, I am a 33yo father of a 2 year old and almost certainly have ALS. 2 months ago, about 2 weeks after an illness (not sure if covid), I began noticing very crampy legs and widespread twitching all over my body. I first was frantically searching to see if it could be a side effect of gluten reaction, as I was in the midst of a gluten challenge (I'm celiac). I also started getting parasthesia, dysesthesia, and pallasthesia everywhere all over my body. Eventually, I ran out of hope that this was caused by gluten. I then ended up on the BFS forum. Ah-hah! This must be what I have.

So, I scheduled a neurologist appointment to make sure. In the interim, I looked up some of the tests they might have have me perform. All leg tests were good. One of them was the finger tapping test. I tested my left speed vs my right. My heart sank. My right hand tapped at about 30-40% slower. Doctor and family confirmed it didn't look right.

So, neurologist appointment came up. The guy pretty much said I likely had BCFS and would order and emg for my piece of mind. Didn't even want to examine me. Had to ask for it. And even then, he did a very minimal exam. No rated strength testing, etc. I was trying to explain the tapping, and he stated, "speed doesn't matter" before I could show him the difference between the two hands. He "guaranteed" I don't have ALS or Parkinson's. I felt good.

That was until a few days later when I noticed atrophy in my right hand. Both muscles described in split hand. The adductor pollicis was clearly flattened compared to my left and thenar clearly smaller. Hypothenar intact. I'm left handed by the way, which means there should be almost no muscle difference between the two hands.

This is when my depression really set in. I went to my gp, and he found a unilateral brisk reflex on that same right arm. I now have brisk reflexes in both legs as well. That pretty much sealed my fate in my head. I have now spent days going through mimics trying to see how likely they would be and checking to see if my symptoms fit and they just don't. My emg is in 2 days. I know what they will find. I am just terrified they will find denervation all over my body due to the widespread twitching. I get twitching in my calfs, thighs, shoulders, arms, face, ribs, feet... Everywhere. I realize this would be an incredibly rare subset of ALS. Taking in an ALS diagnosis is hard enough - being told that not only were you so unlucky to get it at 33, but were also super unlucky to have widespread disease on onset before clinical weakness.

I guess I'm looking for comfort. Anyone who had a case start like this with widespread twitching and live more than a year? I just want as much time with my family.

Pictures of hands
https://imgur.com/a/rvrEBo9