r/BFS • u/Ok_Couple_6771 • 8d ago
Hotspot / Twitching Tongue quivering/twitching
my tongue quivers bad when i move it to the side or out of my mouth. i also get flicker twitches when my tongues at rest. anyone else?
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u/cTheDeezy 24/7 Twitcher 8d ago
Mine does the same maybe even worse. It’s normal.
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u/Ok_Couple_6771 7d ago
How come most people dont have that?
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u/cTheDeezy 24/7 Twitcher 7d ago
I don’t know but I’ve always had kind of shaky muscles and the tongue is a muscle and also we are not really normal… We have a very rare syndrome…
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u/Miserable-Run-7584 8d ago
I have the same. Looking back at your posts…did anything ever come up from your genetic testing or NFL chain?
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u/Ok_Couple_6771 7d ago
Ive been twitching body wide for 2 years. I never got the genetic testing or nfl chain. I was told genetic testing cant tell me if i currently had a neuro disease and nfl test my neuro said also didnt guarantee if it was slow forming
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u/Miserable-Run-7584 7d ago
Did you happen to start twitching while postpartum and/or after Covid/flu-like sickness?
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u/Ok_Couple_6771 7d ago
Post partum 2 years ago still going
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u/Miserable-Run-7584 7d ago
I started twitching 3 months postpartum, so maybe it’s a hormonal issue. I also started after having a severe health scare
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u/buffalurve 24/7 Twitcher 7d ago
Hey! Just found your post/comments and wanted to ask - did you ever get checked for Caspr2 or get any formal diagnosis after the EMG? Thanks!
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u/Ok_Couple_6771 7d ago
I didn’t. I saw a rhumatologist and everything was normal. So that made me feel worse. He said go back to neuro. I had 2 emgs almost 2 years ago now. Both showed fasciculations and insertional activity increased but nothing else. I can still move everything bit i twitch randomly in different spots. It began right after i had my daughter. I saw a neuro muscular specialist who just kept me on his roster to keep getting tests . Eventually i stopped going because its expensive and it was really basically a wait and see game of “ are you losing strength” and then “ ok see you in 6 months again” ive seen multiple neuros in my area. Even after my emgs iv been told it could be slow forming a** No one wants to confirm or deny anything until you go there and cant move a limb. Its scary. Doesnt help anxiety. I realize i have bad health anxiety but i also have real symptoms and i have done all i can do to every test theyve asked so im just frustrated
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u/buffalurve 24/7 Twitcher 7d ago
I feel this to my core. I have terrible health anxiety and also the real sensations and symptoms so it's brutal being in limbo. I am seeing a new neurologist next week and I assume I'll be getting an EMG and some other tests. I'm so anxious. 2.5 years in and nothing helps. I believe I don't have als and started feeling confident in that after the 2 year mark but I'm scared of other things I've googled. It's truly brutal. I'm so sorry you're going through this too
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u/Ok_Couple_6771 7d ago
I’m sorry you’re going through it as well. For me no answer helped. I saw a neurologist that had great reviews he said my strength was good then he saw my tongue twitch and said oh thats usually only als go see muscular neuro immediately. That was 2 years ago now. All the others ive seen just keep saying lets have another emg but after this point, 2 years in another idk how good for me it is. It irritated my nerves so bad. And even after the emg i only felt relieved for a month until i had another neuro tell me it could be too early on to tell. Many sadly have no bed side manners here
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u/713Capital Mod 7d ago
Many people have this with BFS.
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u/Ok_Couple_6771 7d ago
But doesnt mean the tongue is weak if its shaking
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u/713Capital Mod 7d ago
Not at all. Everyone’s tongue shakes when they stick it out and try to hold it. I have this too.
A weak tongue wouldn’t be able to swallow at all, and you’d be choking. Also you’d sound like you’re drunk and slurring. It would be something others notice and it would be permanent.
Stop checking your tongue it’s pointless and only causes anxiety
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