Question pertaining to bulbar and limb onset

[twitchycramper]

Hey guys. Let me just say you folks absolutely rock. In the early day of my twitching and cramps, I came here for reassurance and reading through the replies to people complaining of similar symptoms really helped me out. Then I got a clean EMG and I decided to help others with BFS, but not on this forum. I'm on the Facebook groups dealing with it.

So that part aside, I often see twitchers start worrying about swallowing issues or "weird throat feelings." My approach with these people has always been this:
1. Tell them that "globus sensation" is extremely common with anxiety, which is an issue I'd says 95% of BFSers have, and
2. Tell them that limb onset ALS couldn't just shift to bulbar without the disease progressing substantially.

Now my question to you guys is whether I am wrong in telling them my second point. I've read some research papers that stated this exactly, but I've also read conflicting articles that say you can have both occur simultaneously. I really appreciate your expertise, and I wish you all the best.

 

[KarenNWendyn]

Hi TC. I’m really glad you don’t have ALS. I appreciate that you wish to help others.

My suggestion for anxious people with BFS is to have them discuss their concerns with a physician. Once the physician examines them and determines ALS is highly unlikely, then it is appropriate to address their anxiety if worries continue. As far as telling them “that limb onset ALS couldn't just shift to bulbar without the disease progressing substantially,” again, I feel that concerned persons should address their concerns with their physician. It’s not always appropriate to apply generalizations to individuals.