Bulbar onset ALS??

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pman318

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Hey everyone thank you all for this forum and the time y’all take to talk to people who are concerned about ALS. I have read the sticky note and it was very helpful. However I do have a question about twitching. I have been having twitching in my tongue for a week or so now. It does not seem to be constant but I do feel it daily. Sometimes it feels like my tongue is moving and other times like some one is squeezing the tip of it. It’s not painful but I am aware of it and can fee when it’s happening. I do not have any weakness that I know of my speech is fine and I seem to be swallowing ok, but I am very concerned about my tongue. I saw on the sticky that twitches without weakness or meaningless but I guess my question is with bulbar onset can or do the twitches start first in the tongues. Meaning will I eventually develop weakness or does weakness come first. I appreciate anyone who can help me with this or give me tour thoughts on if this sounds like early onset bulbar ALS
 

Nikki J

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As it says in the sticky an ALS expert neurologist said tongue twitching is almost always benign. In my family the first bulbar symptoms always related to failure- speech and swallow issues

perhaps consider why an intermittent symptom of one week has you worrying about a fatal disease? As always when you have a health concern your first stop should be a real doctor
 

affected

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Twitching means nothing 😊
I am totally with Nikki - why would you possibly think after one week of a vague symptom that you have a rare terminal illness? Actually that is rhetorical.
Please see a doctor, you don't say anything about having done that, and surely that is the first thing you should be doing. All the very best.
 

pman318

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Thank y’all for y’all’s response… I did see my PCP today just to ask him about it he said he could see my tongue twitching but it did not look very big, (not sure what that means). However he said he would do a work up, blood test, MRI, and referral to neurologist, but he said if the first two things come back with something then we would cancel the neuro appointment. He did say twitching is a symptom of ALS, but at my age 33 he feels that would be uncommon. However now I am a little concerned that there is something he is seeing which is why he is doing the neuro referral and the MRI or is this common practice.
 

lgelb

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Defensive/CYA/cautious medicine -- whatever you call it -- relates as much to him as you. Don't take this as a reason to worry.
 

affected

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Twitching is a symptom of ALS in the same way that a headache is a symptom of a brain tumour. On its own, MEANINGLESS.
If you are concerned the doctor saw something, go back and confront them. Don't try to pick it apart here.
 
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