Unsure and scared

[Jselliott07]

Hi guys. This is my first time posting on here and I don’t fully know what to say. The last year I’ve had fasciculations that started out of nowhere. Started on my leg and moved to my whole body. I had an emg done that doc said looked normal but cut to now, I saw my neuro today and he notated and marked the atrophy I have along my back. He has me going for an mri in a few weeks and drew labs for a lot of blood work. My overwhelming concern/fear is als. I’ve had some leg weakness, no failures as of yet, just feel like I don’t have my full strength. Occasional swallowing issue but a normal swallow study. I know asking strangers on the internet is just silly, I just don’t know what to do. Doc said “well looks like we’re going fishing, I’m hoping we don’t catch anything.” On me asking what this could mean. In my mind, twitching, weakness, fasciculations and now atrophy have a very scary diagnosis. I appreciate anyone’s advice.

I also wanted to add I have constant shaking muscles when I try to use them. Tremors and shaking along with fascinations. I just worry it’s the weakness. Does anyone have any ideas on what’s going on or any similar stories?

 

[lgelb]

At worst, I would be thinking about adult-onset muscular dystrophy or something -- not ALS. You don't say how long ago the EMG was but you were symptomatic at the time, so it's hard to see ALS in this.

Best,
Laurie

 

[Jselliott07]

The emg was about a year ago. I don’t remember if I had the back atrophy at that time, I think I did but I’m not 100% sure. They also didn’t do the emg on my back, just did my leg and my arm. I just have a pit of fear and sadness in me with all this. I just don’t know what would cause this aside from the three letter word I’m terrified of. I don’t have any real weakness but I do have the heaviness and shakiness of my muscles, so I guess now I see if weakness follows. I just hate the waiting and just want to be ok.

 

[lgelb]

It does not matter that they did not do your back or whether you had atrophy there then. If you had ALS then, it would have shown up in leg and arm muscles, even without symptoms.

Besides the more esoteric dx like MD, you could easily have a spine problem -- damaged nerves -- this is very common. And treatable.