Tongue Twitchers - Minority?

Highlights Only
Yes, I am a tongue twitcher. Mainly on the right side. I now have additional numbness and tingling sensation also on the right. My right mouth area feels a bit like I've just visited the dentist and received novacaine. New symptom. Not sure what to think. Too tired of all this to think much anymore. Cramping and pain are wearing on me.
 
I live in the same area as you do! Hmmm....I do wonder if there are any environmental links. Have you been tested? How long have you had the twitching? I am a one-sided tongue but whole body twitcher too. Let's try to help one another. Meds do take off the edge but I still worry all the time. I am curious if your neuro had any feedback on the tongue thing, if you have a neuro.

Stay in touch!!
 
Hi J.L. Gray, I have been twitching for over 7 months. Yes, I have been seem by a doctor. In fact, I had been referred to the Mayo Clinc for other issues (that could not be figured out here). When the Primary Physician at Mayo took note of the muscle twitching, pain, cramping, tremors, and tongue involvement, he scheduled me to be seen by the Chief of Neurology. That doctor, in turn, ordered an MRI of Brain, EMG and Nerve Study, and blood tests. Diagnosis: BFS not ALS; MS--ruled out at about 85% (need to wait and see if other symptoms present in the next 6 months).
Funny, how my other symptoms (silent ones) brought me to Mayo Clinc in the first place. It is these problems that will be neeeded to be closely monitored indefinately, and these (silent ones) that have the potential to cause the most devastation in the long run. This BFS ordeal (the most painful and annoying condition) is nothing I should lose sleep over (ha-ha), but I do. I don't worry about this turning into something more ominous, however, the chonc nature of this pain is wearing on me. I have been prescried Neurontin (from Mayo) to help with symptoms. If this does not work (and I don't think it is), then Topomax should be tried. The idea is to find a drug that will address all symptoms without aggravating other (such as tremor). I do also suffer from Migraines--and these are the drugs that are supposed to help with those also. Hope I was of some help. Stay warm if you can. We re now in a DEEP FRREEZE!!! Have a great weekend.
 
Yes, my tongue has been twitching for over 1 1/2 years. Also went to the Mayo Clinic and they said it was nothing to worry about. It used to really freak me out, but I'm used to it now.
 
I also have tongue twitching not all of the time. I haven't had a major tongue twitch in 2 months you know the ones that you see. i do get strange feelings on the edge of my tongue light sensations , I will go to look in the mirror and I see nothing. I have seen 3 neuros and even went to UCLA Neuro Center and was told by everyone that tongue twitching can happen with BFS and was told not to woory about. Although it is tough to do.
Paul
 
:p :p :p I thought I 'd start out with a cute one......

I went to ENT yesterday--in practice 20+ years. He didn't even bat an eye at the tongue twitches. He just said that I could see a neuro (I already have, but for early body twiching, not tongue) but I would probably be wasting my money as some people twitch and they cannot remedy it. Almost made me wonder if he or someone he knew had BFS. Anyways, that was a relief for now. Thanks to those of you who responded, as always, this forum is the anchor in the storm of fear...

Hey, mstwitch, how are you doing? I don't want to be intrusive, just curious as to what is going on that they are watching for so many months. They originally thought I had symptoms of MS so they did 2 brain scans about 3 months apart with no signs of lesions. Are you on the lookout for that? I know you mentioned 85% ruled out, why is there that 15% margin? Just hoping to learn more about my possible dx and will pray that you get pain relief. My sister-in-law has lupus and fibromyalgia but was dx pretty quickly. She has a lot of pain as the lupus is in the arthritis family. My mother-in-law lived with it for almost 40 years. One thing she did was take 1200mg of vitamin E a day. It is something the Canadian equivalent of Mayo told her to do and she went into remission. BUT, vitamin E is great for all of us. Maybe check to see if you could take it in a higher dose. It does work wonders on tissues and may relieve some of your pain.

ariza_z2021
 
BillBob, How much neurontin are you taking, if I may inquire? How long have you been taking it and when did you first experience some relief? Thank you kindly in advance for your response. P.S. I am taking 900mg/daily and have been since late October. Pain level has increased to a point where I feel worse than I did at the beginning. Does this drug help you with twitches, tremors and body jerks? I feel like I am just a mess again. Not at all with worry about ALS, just plain feel miserable to the point where I wish I could just keep sleeping. I don't, however. I stay very busy with job hunting, taking classes and my everyday routines with home and family. Take Care.
 
mstwitch,

I take 1800 mg/day of neurontin. I started with 900/day, and had some relief, but really started noticing a difference at the increased dosage. I've been taking the neurontin for about three months now, at the increased levels for about a month and a half. Prior to neurontin, I was taking trileptal which helped with pain as well, but during the switch, it came back. I still suffer from pain if i do any physical activity (beyond normal activites), but no where close to what it was. As far as twitching, it hasn't seemed to help much, but who knows how bad it would be without it. So that is a hard question to answer.

Good luck, and let me know if you have any other questions.

Gary
 
I have never had tongue twicthing but I did have tongue numbness and I had facial numbness like after novcaine at the dentist's. BFS is really bizzare and the bizarreness is one of its symptoms ( migrating parethesia ) ( numbness, tingling, burning ). Your tongue has voluntary muscle and I would assume it could be affected just like anyother muscle.
 
Dy-

I relate exactly. I publicly speak for a living so I guess I would have to call in sick to give it a rest! I have had a few days where it is quiet but now it feels almost swollen. Can you relate to that? Yuck, where do I get a refund, I didn't sign up for this :LOL:

Stay in touch....

ariza_z2021
 

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