Worried about bulbar onset

[Alison83]

Hello

Thanks for taking the time to read this post.

I’m very worried/terrified that I have ALS. Symptoms started a year ago with twitching in the tongue that I could see but not feel, and this has spread throughout my body (I can see and feel most twitches apart from tongue ones)

I’m mostly concerned about bulbar onset, my tongue twitches at rest and has done for a year. I also get odd feelings of tightness in my face and tongue, almost like it’s being squeezed from the inside....surely this is not normal. I’m almost certain it’s spasticity as it comes on when I move my head backwards like when I lie down.

I have seen neurologists and had an EMG a year ago which was normal, reflexes were normal and I’ve been diagnosed with benign fasciculations. Symptoms haven’t massively progressed but I’m not sure if they do in the earliest stages.

I do have other symptoms, I have noticed that my thumb muscles look like they are atrophying. And I’m sure I’ve elicited the Babinski reflex in myself although neurologists have not been able to replicate this.

No one believes me and I’m at a loss as to what to do next. Any advice much appreciated! Thanks

 

[Nikki J]

Teitching is non specific tight feeling is not an ALS symptom. Emg was negative you have seen neurologists ( plural) who say no ALS. No one can test their own reflexes. Not even a neurologist.

since you have had apparently multiple opinions from neurologists I would suggest you talk to your pcp. If they should happen to suggest counseling please listen