Tongue & Throat Problems: Advice?

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FabulousOne

Well-known member
Hi everybody,

Those who had the patience to read me know I've been dealing with tongue and throat problems for almost all summer. It all began in early july, when I had the famous lump in the throat feeling and since the beginning of august, I also have weird tongue feelings : like a burning sensation, or prickling, or buzzing - very hard to describe, and it seems like I won't be able to form certain words (in fact nobodoy around me noticed anything so far). Also these feelings come and go along the day, but I can't say there's a moment when my tongue feels perfectly fine. It's more like a change of symptomes (sometimes the tip of my tongue, sometimes the right side, somtimes the back - also, I feel like me tongue is easily tired when I eat).
I've never had any real swallolowing issue : in fact, since some of you talked to me about GERD, I looked for some information about it, and my symptomes tend to fit in perfectly : the lump in the throat which disappears when I eat, etc. In fact, since that day, my throat problem seems to get a litlle better. Thanks for that.
I know this sounds insane but I am now worried about my tongue. I'm trying to get away from this nightmare. I've been twitching all over for almost 14 months now - but the two things could be unrelated, right ? I've had more face twitches lately. Anyway, I've been told that bulbar als was very fast, but how fast ? Should I see something after two months throat problems and one month tongue ? I read somewhere that it could first come and go, for a few weeks. Is that right ? When can I consider myself in the clear ?
Sorry for all this. Sometimes I realize how far I am from what I were one year ago. Sometimes I have the feeling I've made no progress at all : bascically, i'm still obsessed by als, altrough my body twitches have decreased dramatically. Now it' s the tongue.
Thanks all of you,
Fabrice

PS : no tongue twitches as far as I can tell
 
Take an antiacid (zantac) before you go to bed. it will help with the acid irritating your throat when you sleep. I also have the tired tongue symptom. I've had it for 5 months now, on and off, I try not to think about it, after all, its a muscle like all the other muscles. If my arm feels tired , my tongue can also feel tired. Also the fact that we focus on it doesn't help I'm sure, we can create muscle tensions very easily somatically. I was actually having a slight problem with my voice which really freaked me out. but my ENT checked my vocal chord said everything was nice, but he said it seemed slighly inflammed below. So he gave me a special syrup and an antiacid. Its been getting better since.
 
my opinion is that if it were *** other people would certainly notice. It wouldn'T just be a tired feeling... you would choke on your food, your voice would change dramatically, you would have a hard time swallowing. Go out with your friends tonight and have a few bears, have fun. Your symptoms will probably ease up when you stop thinking about it ;)
 
fabrice, I am currently experiencing very similar problems. My twitching started about 13- 14 months ago, and I have had 3-4 clean emgs and nerve velocity testing. And a brain and spinal MRI. All of it was normal. I was taking klonopin for the twitches, which helped, so I weaned down to only .25mg at night. Then the twitching started up again, after only one incident of rapid bicep twitching. I got anxious...very anxious. The old thoughts started creeping back. My tongue lately has felt like tiny grapepie popping on it. Remember that POPROCKET candy? Well a milder version of that. I keep looking in the rear view mirror while driving(don't laugh) looking for fascics. Well...I went to Toronto for a relaxing weekend with my husband, (which wasn't always so relaxing)....I get home, and my worst fear happens...DEFINATE twitching on my tongue...serious jumping for a few minutes. Now I look in the mirror all the time and see only little vibrating movements....here and there, sometimes constant. Is it my pulse in my tongue? Don't know....have been driving my husband crazy..."stick out your tongue I say". My g.p. noticed something, but he didn't really seem to understand what a tongue fascic looked like. I think he interpreted the jerking quivering movements that I think lots of people get as fascics. He wouldn't be encouraging no matter how hard I begged. He is always affraid of being sued or something....covering his *beep*.
My other post had replies from people that were so encouraging.
My throat too, feels tight and have been having a little difficulty with swallowing, but I think that is from stress, and crying.
I am pretty sure that there would be severe atrophy, and weakness, before the fascics. You would be really slurring your words and drooling etc. If you had a clean emg before, my doctor said that they look for very specific patterns on that test..they don't always even need to do a tongue or bulbar region emg to make a bulbar onset *** diagnosis.
I think that in your case and mine, we have just developed some new symptoms of BFS.
I am seeing a neuro this week anyway...and I am begging to have another emg on my tongue, to put this bloody obsession to rest. I'll let you know.

Jodi
 
Hi Jodi
Thanks for your message.
I didn't get an emg. A few months ago, my GP didn't see the need for it, said it was a "ridiculous" idea.
That was before that tongue issue.
My question is, considering the fact I have had all these problems since the beginning of july, with up and downs - could this look like als after this time ?
Thanks again for the support,
Fabrice
 
Fabrice...If it makes you feel better, I too, am in the same boat wondering..."gee...maybe this twitching that I have been having is BFS, and this tongue thing really is bulbar onset als....hmmnn..."
I think that would be increasingly unlikely. That we would have both going on at the same time. BFS doesn't turn into ALS, as far as I have ever read.
Now...I have been twitching all over my body, except the tongue, for 14 months or so...I have even had an emg study near my spine in April of this year...about 41/2 months ago....it was normal.
I have read that if I had indeed bulbar als, then the paraspinal emg would have picked up on it then. I should have already had perceived tongue weakness by then (weakness precedes twitching...in almost all cases).I read some where that by the time you fasciculate in the tongue, you have already been sick for 5 or 6 months.
Now I am twitching in the tongue....still no weakness, I can move it all around, whistle, tent my cheeks etc. Do you follow my math?
(Sounds like I am trying to convince myself at the same time eh?...maybe I am) My point is...if you aren't really slurring your words, or choking...it is most likely BFS....Bulbar is apparently very progressive and fast...Get an emg if it will ease your mind...nothing wrong with that, I am going to do that this week....but I also have OCD, and am driving my husband crazy with making him stick out his tongue to compare.
good thoughts out to you...Jodi
 
Personally, I think your concerns about bulbar als are not grounded in any logic. Like my concerns about als in general.

I read an account of Tom Watson's caddy who had bulbar onset. We are talking very drastic issues. Difficulty speaking, coughing bouts, swallowing, etc. His came and went just for a very short time but then it just got worse and worse. In 5 months he was in very very serious condition.

I think since we don't know what als really looks like we panic thinking something is missed. It's not. I am beginning to think if all of us went to a nmd clinic we could get the picture fast.

Now so I don't get flamed by the bulbar onset police - I am not a doctor, not an expert, never have seen a case of als, and know next to nothing about this whole issue. This is just an obvious perspective from reading the little I have on these subjects. My wife too researched real als cases for me when I was too worried to look at it. She said, "Mark, based on what I read, you definitely don't have als". In other words, als is a brutal disease - when you have it I imagine it is the pink elephant in the room.

Live. Stop thinking about your throat and tongue....I know, easier said than done...
Mark s
 
When you say 'came and went just for a very short time,' how long was that? I've been somewhat heartened by the fact my difficulty with speech and swallowing seem dependent on the time of day recently, but I've only been having these issues 2-3 months.
 
The book did not give an exact time frame. Only that it was a brief period where the weakness came and went. As I recall the symptoms were VERY serious in five months. People thought he was drunk when he was talking to them. You don't have als.

MarksmanS
 
I also have been twitching for 14 months. Just lately have I began to have the feeling that I have hair in th e bakc of my throat and feel like other funny things are happening with my tongue. Of course this comes and brings me right back to the funky place of worrying about ***, again.

I keep clearing my throat, spitting up(sorry) all trying to clear that sensation. I hate to think that I am going to start to freak out about this and be back at square one again.

I guess we have to keep in mind that after all this time, I think the odds that anything has been missed, or anything has waited this long to pop out is small. Let's think about how many of us posting just on this post alone think/thought about having tongue onset even after we have been all over twitching away for months,even years. Do any of us have it? I would venture a good guess and say no. Do either of us think we have it? Yes. The nature of this beast.

Hang in there, we'll all hang in there together.

(trying to cough or gag this sensation away as I type, and watching my hands shake as I type. Going to be a good day..hmm.)
 
In France, for what I've seen on the web, all tongue sensory feelings, like buzzing, prickling, etc. are CLEARLY associated with anxiety.
I think you and I are fine - as far as als is concerned. Take care.
Fabrice
 

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