"Could I have bulbar ALS?"

[Aytac12334]

Thank you for your response and kind wishes. I'm trying to calm myself down and trust the doctors. I've stopped talking to AI tools like ChatGPT. During my last hospital stay (June 11), we saw from the blood tests that my vitamin D level had reached 30 and my vitamin B level was at 770. Only one value—homocysteine—came out high at 18, when it should be between 0 and 12. All other blood values like magnesium and calcium were within the reference range. It doesn’t seem to be a condition caused by blood values.


What’s also troubling is the inability to explain the oddities in the last EMG. The doctor who performed the EMG said, "At the moment, I don’t suspect a motor neuron disease, but we definitely need to monitor this—it could be the beginning. There is reinnervation and neurogenic involvement in all muscles." However, my neurologist ruled it out, saying it’s only reinnervation and there’s no denervation or fibrillation.


Additionally, for the past two days my legs have started to struggle significantly—today, when I stepped on my left leg, it felt like I might break my ankle. And tonight, I had another episode: in my dream, I was lying on the ground and couldn’t speak, and while trying to express myself with strange noises, it turns out I actually did that in real life—my wife heard the sounds and woke me up, trying to calm me down. When I woke up, my right arm was twitching like crazy.


I’m not trying to say this is ALS—I just know that I’m experiencing something and I need a logical explanation.

 

[ShiftKicker]

Hi there-

We will not contradict what your neurologist has said. They have your full medical history, examined you, are the expert in reading the EMG results. Your neurologist explicitly stated it was not ALS and told you why.

If you feel your symptoms have changed, by all means return to your doctor to show them. This forum can not perform the function you wish it to, which is to keep ALS as your focus. I don't think anyone has told you nothing is wrong, only that it is not looking like ALS. Your continued focus on that disease could be an obstacle in the search for what really is wrong.

I will be closing this thread at this time as part of an effort to direct your focus away from ALS. Please return to your doctor if you have any further questions or wish to discuss your symptoms.

Take care