Confused and Relieved: A Long Journey

[Tweeker]

Hey, I am new to this site, but am relieved to know I am not alone. Almost 3 years ago I was convinced that I had ALS. I was scared, and cried everyday. (I have 2 young children to raise) I went to a neurologist, and after runing an EMG and an EEG and an MRI, he told me that I positively did not have ALS. I was relieved, but to be honest, still dwell on it after all these years. I am still terrified of having it. I have most recently began to have twitchin in my tongue. They are very mild, and when I feel them, of course, I run to a mirror to check. But I never see them. Naturally, my anxiety causes me to start thinking I have Bulbar Onset ALS. I have no weakness, so slurred speach, but can't get rid of the fear!

I am so greatful to have found this site. I am just wondering, does anyone out there have the tongue twitches, can BFS occur in the tongue? Please respond!

 

[diotz2]

Hi gizmo,
a quick search of the archives, heck a quick scan of the first page, will answer your question. I think a good percentage of BFSers get tongue twitches. I have had them only once, and I hope I never get them again...annoying!

 

[starGalaxyGazer]

Yes, tongue twitching does occur with BFS. My tongue has twitched on and off for the past 8 months and it is by far the most uncomfortable place to twitch. Bulbar onset is about the last thing you should be worrying about - it is even more progressive than an already progressive disease and after 3 years you can safely rule it out.

 

[JennFiction]

My neuro noticed I had tongue "tremors". It doesn't feel like the twitches I have in the rest of my body, but it will move my tongue. It is probably best described as a shakiness. I find that anxiety plays a role in the "tremors" I have in my tongue. Also, if you stick your tongue all the way, it has a natural tendency to move a little. After all, you are putting a strain on the muscle that it is not used to. I worried about bulbar onset too. The worry was so invasive, that it make me feel like I had trouble swallowing and slurred speech.

Chris

 

[reneecatx]

Wow Chris,

I've never heard of tongue tremors....maybe I have that since my tongue moves like crazy when I stick it out. I just assumed everybody's tongue moved like that. Are there any other tongue tremorers out there?

I can relate on the fixation with bulbar onset....I think everyone here can. What a pain in the b-u-t-t.

Jen