Hidden Tongue Hot Spot Twitches

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Ghandiks

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Hi All,With BFS is it normal or do any of you guys have fine constant hot spot tongue twitches that you cannot feel? I just discovered a spot on my tongue today that was twitching VERY FINELY, couldn't spot it if I didn't look closely, looked like it was almost vibrating. It is constant so I guess it is a hotspot. I cannot feel it though. Sometimes I'll feel my tongue twitch, it feels more like an electrical jolt though so not sure if it is a twitch. On the 27th I'll be four months into this fiasco. No weakness is a good sign right? Your input would be appreciated, thank you!--Helen
 
Have you been examined by a Neuro? What did he or she say? Are you having trouble speaking or swallowing or chewing? Fasciculations are judged by the company they keep (weakness and atrophy, or neither). That is what I've continually reminded myself. I've found through months of self examination, the tongue moves around a lot and in many different ways. I've seen mine have the big movements as well as the very fine twitches. Hope this helps.Chad
 
In a previous post you said that the neuro doesn't think you have ALS (which I am guessing is what you are afraid of). As intelligent (and funny, beautiful etc!) as everyone is on this board then nobody is in a better position to judge than the person with the medical expertise and EMG / exam results. Remind yourself frequently of this :)I know I might sound dismissive (this has been said of me before!) but the honest answer is the one above. Someone else will soon be along with other reassurance (e.g. comments about the prevalence of ALS at your age, the fact that you have body-wide fasciculations, the fact that bulbar-onset doesn't leave you in a lot of doubt for very long etc) but I still think my first paragraph is what really matters.Hope you are soon able to accept that you just twitch and like the overwhelming majority of people that is all it is. It's not easy to do, but with the neuro all-clear it is entirely justified.GlowGreen
 
Chad--Thank you, I have been to a neuro and did a EMG. Clinical exam was fine but the EMG showed increased insertional activity which I guess can be abnormal for the normal person but normal or expected for a person with BFS. My neuro did not put me in the all clear zone due to this and since it is very early. I also have no problems with speaking, swallowing, or chewing although my jaw does seem to tire out easily. Is the fine twitch you have on your tongue constant? GlowGreen--Thank you, I understand what you are saying. I think I am relatively calm about this (now) but there are times where I get hooked on one symptom and have to ask a question. Like I said above, I didn't have a clean EMG so that is what worries me. Thank you for your advice.
 
No, my fine tongue twitches are not constant, at least I don't think they are. I only look for them occasionally. Sometimes I can see them, sometimes not. Honestly, it doesn't really matter. Any muscle can twitch in BFS. And fine twitches are no more ominous than big ones, according to everything I've read, anyway. As for increased insertional activity, it seems like tons of people have gotten "clean" emg's with that being present. Again, without obvious weakness or atrophy, it sounds like you're safe. Believe me, I know it's tough. I sometimes feel like I'll never fully accept that I'm not dying of you-know-what. But the fact is, twitching being the first symptom of that disease is very, very rare, and if any of us who have had even a "relatively" clean EMG with no real weakness end up being diagnosed with it, we would be a scientific marvel.
 
Hi Chad thank you, I've only read that BobJazzy has had increased insertional activity, haven't seen any others on the net yet. So from the accounts you've read people that had increased insertional activity were considered to have "normal" EMGs? Too bad my neuro told me it was not normal...I guess that was why I was worried about that.
 
OK, you caught me. I didn't see those stories here, but I unfortunately spent a ton of time on another scarier message forum, and many of the undiagnosed people there mentioned increased insertional activity as their only "abnormality" on EMG. If you don't have active and chronic denervation/renervation, and keep in mind I'm no expert, but I think you're fine. Somebody explained it liike this once, and it made sense. If your nerves are hyperexcitable like they are in BFS, then what better way to excite them than by sticking a needle in them? In other words, I think it's pretty common, and probably something some neuro's don't even mention in the absence of other signs on the emg.
 
From a neuropathological point of view, an increased insertional activity is abnormal in healthy people but quite normal in us because it is another aspect of a decreased excitability threshold. In the context of BFS, it is really not surprising.The reason why a neurologist might be worried is that MND in general is heralded by hyperexcitability of both cortical and peripheral motor systems...but as we know from the countless discussions here, this phase is seldom longer than a few months, usually it is just a few weeks.Also no, with BFS, increased insertional activity is nothing to worry about.
 
The only reason I even knew I had increased insertional activity was because I requested my EMG report and read it myself. I was told at Mayo that my EMG was normal. After reading that I had insertional activity in all muscles, I called the Mayo Clinic to ask about it and they said it was to be expected with neural hyperexciteability. As cesix said, we already know our nerves are hyper excited so sticking them with needles should trigger some activity.I would bet many many people on here had increased activity and just never knew it. I wouldn't have known if I didn't request the report. -Matt
 
hkwak002: I do not think it is a good idea to explain these in a place full of anxious people who tend to misinterpret. After four months, I think you are pretty safe. Add the clean EMG and it is even more!
 

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