My tongue is worse

[michelleG]

Hi everyone...I posted several months ago about a constant pulse like twitch I had in my tongue. I was cleared by my neurologist after a clean EMG of the bulbar region. Well for the past week, I have the most bizarre twitch to date. It's near the back of my tongue near the side. It twitches so much like a rapid heart beat. I can't feel it. Anyways, when the neurologist had me stick my tongue out with force, the twitch went crazy and started fluttering away even faster and it was almost like someone was sucking in that teeny portion of my tongue with a vacuum. Then he had me take a deep breath. Every time I took a deep breath, the twitch would flutter away even faster. He said he has never seen anything like this and he is a neuromuscular specialist. He was so confused by it and has sent me to have a ton of lab work done. Has anyone experienced this type of tongue twitching and had it be ALS? I had calmed down about my other twitch, but this one is much more dramatic looking. Does anyone have any of their own experiences to share with me? Thank you.

Michelle

 

[awieleba]

Yes, I have had what I think is similar. It happen last summer, it was a twitch at the tip of my tongue and it was sucking in and out rather than worm like wiggling, it looked odd, not subtle. I showed my husband and he said forget about that twitch, why is your tongue all dented up? I have those groves, teeth groves. I have no bulbar sx that I am aware of other than extra saliva when talking, and nothing has gotten worse in my mouth. NO eating or slurring issue's. My body, is a different story.

Take care! Are you getting another emg on tongue?

april

 

[michelleG]

I don't know whether they are going to do another EMG on the tongue. My neurologist believes that if it were due to a pathological process, that I would definitely have weakness in my tongue by now. He also said that most of the time with ALS, the tongue looks like little ripples that involve the entire surface. He is confused though as to why this twitch won't stop.

 

[ktmj]

michelle, most likely it will stop eventually.

I've had a twitch like that in my tongue that is very inconsistent. Sometimes it pulls in and out for an entire day (and it is one that I can feel) so it is kinda aggravating, Sometimes it will go for 1-3 days, then disappear for a couple of weeks. Not the typical ALS tongue twitch either.

I can relate to the time period too. It was not my tongue, but my eyelids. Both eyes, upper and lower, twitched literally non-stop for about 6 months. Of course the normal stress factors, caffeine, being tired, etc. made them worse, but there was not a day they didn't do it most of the day. First I thought I would go crazy, then I learned to live with it, then one day I realized "hey, they're not doing it anymore." And they have not done it since. That was about 15 years ago.

Hope that helps.

 

[planningguy]

Michelle,

Like April and ktmj, I get them too. In fact, recently I've been getting some pretty strong twitches that almost feel like the tip of my toungue is going to bend. Clean EMG's too. Bizarre, somewhat annoying at times, but not ALS. Take heart.

Best wishes,

Robert

 

[michelleG]

Thank you for all of your kind replies. I thought I truly had my anxiety under control until this started up. Has anyone who has ALS experienced only localized tongue fasciculations? Thank you once again.

 

[michelleG]

I forgot to mention that my neurologist has viedeotaped me because he was so surprised that I had a Chvostek's sign. This is when they tap the side of your jaw and your lip twitches. He said that he had never seen that before in all the years of his practice. He also showed several other neurologists in his group who were baffled. It normally means hypocalcemia with hyperexcitability of the nerves, but my calcium levels game back normal. Maybe Wright can offer his opinion on this one. The only blood test that came back abnormal was the anti Gad antibodies. Apparently, mine tested on the high side. So does anyone have any experience with these signs/tests and/or have localized tongue fascics? Thank you so much again for your time.

 

[michelleG]

So I just went to a follow up with the head of the neuromuscular department. He took one look at my tongue and said that he's definitely noticed a progression in fasciculations since he first saw me. He said he finds it weird that it is only noticeable on contraction of the tongue. He said that he does not believe it is ALS, but that he can not make any guarantees since I do have these two constant localized tongue twitches that I can not feel with no apparent cause. Sorry to keep pestering, but has anyone with ALS experienced localized tongue twitching that only occurs occurs in one or two consistent spots?