Anyone experience a perceived "thick" tongue?

Information about how to manage or reduce the severity of BFS symptoms

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Anyone experience a perceived "thick" tongue?

Postby chad23 on April 14th, 2004, 6:46 pm

I was diagnosed last March with BFS. My neuro at my exam said he felt no need for an EMG. The twitchings were what got my head spinning. I was a nervouswreck for 3 months last year. I had some relapses in the summer, but nothing major...until now.

I need some help. Last week, I picked up a newspaper and I read about a guy in the next county who has ALS. Of course, I had to read it. I read about how he said he had trouble moving his legs and trouble swallowing saliva. Those were his first symptoms.

Well, the panic came back. For the last 10 days since reading it, I have done nothing but swallow. I now have a CONSTANT dull, almost throbbing ache in my throat muscles(especially under my chin). I am seriously so upset right now. I feel like I cannot talk. I am constantly checking my speech.

I found something called Globus Hystericus, and this sounds like what I have. I have NO trouble eating or drinking, I swallow fine. I scheduled a visit with my ENT tomorrow because I cannot take this anymore. This ache in my throat and jaws is killing me.

Is this type of muscle ache present in early ALS? I can't stop thinking about it. When I eat and drink, it feels better. When I cried, it felt better. But it always comes back.

I fear Bulbar so bad now. Has anyone had any "fears" or experiences with the Bulbar fears. Did you find yourself getting tongue tied? I can move my tongue real fast, but it seems as though I have trouble saying words(but maybe I always have...I never really paid attention)

Someone help.
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Postby Heater on April 14th, 2004, 10:45 pm

I have had the bulbar concerns too. It started with a persistent post nasal drip feeling I developed in mid March. Everytime I'd swallow I'd be focusing on trying to determine if I was developing a problem. I still have the post nasal drip feeling, but I'm pretty certain it's just my spring time allergies...they are starting to pick up big time now as I have persistent morning sore throat and hoarseness, like I do every year. I also find myself checking my speech, with the feeling that words are more difficult to form, but in reality I don't believe there is any change. I've always been a bit of a mumbler. I'm chalking it all up to anxiety.

One thing you mentioned, that I've had for the last couple of months, is aching muscles just under my chin, as well as my upper jaw. This seems to come and go at random. You may notice from some of the past posts here that muscle pain can be a symptom too.

In my opinion, after a year following the BFS diagnosis, I wouldn't think there's much possibility at all of your symptoms indicating any other condition. Good luck at your appointment tommorrow.
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Postby TheyDon'tBelieveMe on April 15th, 2004, 3:43 am

chad...my issues started ten months ago with speech. An occasional slurred word. Sometimes it's real bad, sometimes I have no problems at all. It got worse for a few months and then got better. I also had a period where swallowing liquids was more difficult and there was some build up of saliva. All that seems to have subsided. I rarely slur now, but I certainly feel that my tongue and mouth are "lazy".

A clean EMG and two world-class neurologists tell me I don't have ALS. I guess I believe it, so when your EMG comes back clean, you should believe it too.

The doctors will likely tell you that pain has nothing to do with ALS. That's not completely accurate, but you can be confident that pain is rarely, if ever, a presenting symptom of ALS. As for the ache in your throat, I've had that too, twice. Each time it lasted about ten days (it wasn't a normal viral-type sore throat; it was more muscle-related like what you describe). I too assumed it was bulbar ALS related, but it went away and I still don't have ALS.

There are lots of muscles involved with speaking. So, whereas BFS is neuromuscular related, therefore it's logical that there would be some impact on speaking.

As for "trouble" saying words, any speech therapist will tell you that the more you think about talking, the less well you talk. You're analyzing your speech right now far more than you think. Because you've got BFS, you might have some speech issues. However, your worry about speech is probably causing you to have far more problems than you would have if you didn't worry about it.
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Postby jcavan4125 on April 15th, 2004, 6:04 am

Hi,
I can tell you that with onset of symptoms over a year ago and a clean EMG your chances of having bulbar ALS are not a million to one, they are zero! Bulbar onset ALS is the most rapid and aggressive form of ALS and follows a steep downhill course. Life expectancy is generally 1-2 years. You do not have bulbar ALS! In fact, you do not have ALS. Relax and I'm sure you will find that the symptoms will resolve. With BFS they always do.
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby chad23 on April 15th, 2004, 1:17 pm

Well I am back from my ENT visit. He scoped my throat, said everything was normal. He gave me prescriptions for allergies and for GERD.

It seemed to put my mind at ease...for like an hour! Now the anxiety is setting in again. It feels like the muscles in my throat, under my chin, burn when I talk. He said that anxiety will do that.

I have no problem physically talking, and my swallowing is still good, but the doc says that my muscles maybe tensed and when I try to talk, they ache.

Is this just my throat tensing up because I am constantly thinking about it. Its like a burning, throbbing in my muscles in my throat. Still feels like a lump. Its like the feeling you get when you are on the verge of tears.

Is any of this normal?
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Postby thetwitchkid on April 15th, 2004, 1:43 pm

Chad:

I still have times where I feel the lump in my throat, or slur a word or two or three !!. Stress, Stress, Stress !!! My tongue is scalloped and I swear it was not before BFS. All of this can be atrributed to stress. You are probably just stressed . The trained medical professional thinks so. I know its hard, but try to believe. Remember, be thankful your doctor is so sure it's NOT something else :)
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