Tongue Symptoms, Fear of ALS

[umetardedspinach]

Hi,I posted back in feb (almost 8 months ago) about having tongue problems. burnt feeling. tingling (electric current), dry and parched sensations. The tongue hasn't improved and remains a constant and unwelcome companion. The fear of ALS remains as well, because of the twitching I have in my tongue, my limbs, stomach etc. Its exhausting.I ignored the twitching for about two years, but the tongue was the one that really got me on the ALS track. The slurring of words, and the dents and hill like surface of the tongue has me terrified. I don't know whether to go to a neuro because my doctor just waved off the twitching two years ago as nothing (without even looking. I was 19 at the time so maybe he wasn't thinking MND). So what do you guys think? It can't be Bulbar-Onset because I had limb twitching for nearly two years and even now, I haven't had any problems eating or drinking. Just the sensations and difficulty with enunciating words. Mostly, words with L and RAnd would limb onset progress this way? My right thigh feels and appears dented compared to my left thigh. My right tricep looks almost invisible compared to my left tricep, and the right side of my tongue looks shriveled and dimpled compared to the left side. Does limb onset progress this way? Or does it leave a particular muscle really weakened before moving on?

 

[TwitchyMD]

I would not worry with this sensory stuff about ALS but you should definitely get it checked by a neurologist. The answers here are irrelevant and there are few conditions that can cause condition you describe. Ignoring fasciculations by GPs is unfortunate and does happen as they now knothing (except for prescribing antibiotics or writing referrals). Only neurologist (most likely specialist in neuromuscular diseases) can tell you whether your one side of tongue is normal or not. Mine is also different and also a bit smaller than the other one and it is fine.As for your ALS progression question: there is no 100% pattern but you did not mention any weakness.

 

[BobJazzy]

Given your age, the fact that you have been twitcing for so long, none of your symptoms are anything new on this board (perceived dents, burning tongue, tingling tongue, etc), and no mention of weakness, I think it is safe to assume that you have a boring old case of BFS. -Matt

 

[Snoopeno]

Hi, my probs with tongue also started in Feb, I have seen neuromuscular neorologist showed him video of it twitching away he also checked it on the day and did some basic neuro exam and was not bothered about them.....unlike me of course....still getting them at some point every day though since i went back on my meds which i have taken for other reasons the meds seem to have soften them which for me is better than nothing as i really cant stand them....apart from the twitching i have/had strange metal type taste stiff but not painful jaw, twitching at back upper palate, in throat, strange sounds coming from voice box region at rest, speech sounding different like when dental anesthetic is wearing off, dry mouth or opposite, sensation of fat tongue, scalloped and the left side which the most of the twitches are is narrower than the other side.....Thing is for all that neuro isnt concerned....

 

[umetardedspinach]

I haven't had any weakness that I can think of. I can still walk 5KM a day to university. I haven't been tripping or dropping things which I believe is a sign of weakness. Its just the difference in muscle tone and the disparity of the tongue sides that has me worried.As for my twitches... they have improved drastically from a year and a half ago. back then, whenever I would lay down, they would attack... I mean both my quads and calfs and biceps and just about anywhere that could twitch... now... compared to that, they are almost gone. I only have them for the most part in my right quad and those are 3-5 sec thumpers. before they used to be lightning fast and had a life of their own; moving around and causing havoc. I'm not concerned with the twictches so much. if the tongue would go back to normal, I might even forget about the twitches. god. stupid tongue.