tell me about tongues ...

[SEproud]

I know I'm going to get scolded for starting this thread. I can handle being called a troll and etc. (for good reason I guess) but I still have questions. I'm not due back for a neuro follow up until November.
I still have all the symptoms I started with except for the lump feeling is mostly gone. My question is about slurring. I have been feeling like my tongue was slow for about 3+ months. It has gotten slower I have bitten it badly several times. What I can't figure out is if slurred speech is typically lispy like mine is? It comes and goes throught out the day. I would NOT descibe it as drunk sounding. I would describe it as having trouble completly forming some words and lispy. Trying to figure out if I am imagining it is all I think about. Slow and hesitant (but on and off not consistant), lispy, tight jaw feeling underneath chin and ears, facial twitches. YES, I have gotten two neuro opinions and an EMG of arm, hand, shoulder, and swallow test. I admit I sound crazy BUT if I am lisping and others have started to notice it and my tongue is like 3 steps behind can I really be imagining this? My EMG was only 2 1/2 weeks ago. I feel like I don't even WANT to talk anymore because I'm so frustrated about it. I guess you guys wish I didn't want to type anymore too but what do you do if you feel in your guts that something is wrong, but you can still do all the tongue strength tests so it seems no drs. care? Also, I feel like my tongue is the desert (literally like sand is on it) but the saliva glands underneath my tongue are pumping out tons of saliva. I sound so normal sometimes (speech wise) and other times I am struggling to talk! Cry cry cry is what I wanna do, so that being said, go ahead and "yell" at me it can't make me feel any worse. Am I in fact imagining this? Besides "go away", is there any advice about how to tell if this is MND related so I can think about something else until November?

 

[michael0314]

Nobody means to be mean to you. Try and understand the perspective from this side of the fence. People are truely trying to help you but when it seems you ask for advice and then ignore the answers frustration gets the better of some people. Nobody on here is a Dr. (that I know of) and could not perform an exam over the internet if they were so My only advice is Dont waste a second of so valuable time worring over something you cant control. I know that sounds imposible but think about it if you get a bad diagnosis later, will you have done anything except waste time and energy worrying?
My onset was Bulbar ( Voice, tongue, swallowing) and it was somewhat diffrent than normal I noticed problems that didnt sound lispy(your words) or slurred (normal way of describing). I seemed to have to push more air out to form words and then voice changes. My symptoms were very subtle till I went to an ALS nuero. I did have clinical weakness and my emg came back bad. I hadnt even noticed these other things. My point is you've had an exam and the DR. didnt feel futher testing was warranted. Bathe in that good news and go do something I can no longer do and be gratefull! Best of luck to you.

 

[asantiago]

April 2009 shortly after my mom died, I was convinced I had a weakened tongue and my speech was fading. Absolutely convinced. ALS is hereditary in my family so its hard to not be on constant alert for symptoms. When I put it completely out of my mind it ALL went away. I also thought I had weakness in my right arm.

Here 2 and a half years later I am FINE!

Its hard to put it all out of your mind, but once you do I think you'll stop noticing these things.

The more you obsess about perceived symptoms, the more you will experience them.

Take a time out and tell yourself you are fine, force yourself to focus on other things.

If you still have these symptoms months after you can honestly say you have stopped thinking about them, then go back to your doctor.

 

[notme]

Hon,

Seriously--your EMG was ok, you're pretty well cleared of ALS. If you're THAT concerned, call the neuro and see if he'll EMG your tongue, too.

Excessive saliva isn't caused by ALS--the saliva in ALS is more an issue of the throat not working properly and the PALS can't swallow it. It's not that they produce more than anyone else does (PALS -- tell me if that's a wrong interpretation)

If you don't let this go--you're going to let it take over your life to the point you MAKE yourself ill. Physically ill. Please, hon, relax and get ALS out of your mind. Focus your energies elsewhere. I focus mine on ALS awareness--it keeps my mind off my OWN health issues for the most part.

Focus on your kids--whatever it takes. If you seriously start choking on liquids and slurring constantly, despite all your best efforts--then get in to be seen again.

I don't believe that it comes and goes in ALS--but I don't have much in the way of bulbar issues to really answer with any level of competency. My doc is concerned because I have weakness in my facial muscles and am choking quite a bit--but the only time I ever slur is when I am very, very tired. And I really don't think I have bulbar ALS.

 

[SEproud]

thanks for your time.

 

[trfogey]

Excessive saliva isn't caused by ALS--the saliva in ALS is more an issue of the throat not working properly and the PALS can't swallow it. It's not that they produce more than anyone else does (PALS -- tell me if that's a wrong interpretation)

Correct as far as I know.

ARS06, have you been to your family practice doctor about the gritty feeling on your tongue? If not, why haven't you, other than being too bloody stubborn to get your advice from people that actually know what they're talking about?

You are not qualified to determine whether anything is MND-related or not. Two weeks ago, you got a clean bill of health from one of the finest neurologists in your state. And all you want to do is urinate on that clean bill of health every chance you get. What do you expect us to tell you that will get through that adamantine skull and self-deafened set of ears that you have? Would it make you feel better if we told you that all your doctors are stupid and that you should keep doctor-shopping until you find one that's willing to tell you that you do have it?

You don't want to believe that you don't have ALS. Simple as that. And that is an insane way to go through life.

 

[SEproud]

No I haven't gone back to the GP. I am going to just haven't yet. I don't want to have ALS just want to know that I don't for sure which I know is asking the impossible. Sorry, I knew you would be mad and I understand. I just wanted to know if there was some insight on how speech problems sound or start or feel. So, I can tell if what I have is real. If the way I sound is a neuro problem or something else. But thank you for your answers.

 

[Hope1935]

Asantiago, I saw your state of residence on here and I am also from Oklahoma. I am sorry for the loss of your mom. My grandma is in the process of being DX with ALS... Doing the final EMG tomorrow. I was just wondering if you used doctors instate for your mom or out. I don't know how/if you can send private messages on here. Thanks for any advice.

 

[SEproud]

hope1935,
i dont mind you using this thread at all but if you want to send a private message click on the name and it should say -send private message- but i think you have to have posted a certain amount of times before it will let you send one. i am sorry to hear about your grandma.

 

[HelenL]

ARS06, I'm sure this has already been looked at, but that lump feeling in your throat could also be something to do with a thyroid issue.

The other thing I would ask is if you notice the tongue issue more after eating certain foods, drinks, or after any supplements. Start a food diary and see if you can pinpoint anything in particular, then go back to your GP. I know my tongue tingles with the creatine I take, and after I drink my Diet Pepsi, and I don't have any bulbar symptoms.

 

[notme]

Your neuro would have noted any abnormalities in your speech--I think you're just so 'aware' of everything that you're making things worse. The mind is a powerful thing.

People can literally convince themselves of symptoms--to the point they have those symptoms. Hysterical blindness, for instance comes to mind. So convinced they are going blind that they do.

I've seen people paralyzed the same way. Nothing physically wrong--but they can't move a muscle.

Now, those are health anxiety issues to the extreme--but you see where I'm going. Give these strange symptoms til Nov to your next appt and let it go til then.

Going back to the neuro now would be a waste of YOUR time (not to mention cause anxiety) and a waste of HIS time, as he's just cleared you two weeks ago.

 

[alex scared]

hi . . Last year i developed some slurred speech and tongue fasciculation recognised by my neuro . . My speech is also lispy and sounds quite similar to what you describe except mine never any different no matter what time of the the day . Here is the good bit . . I dont have als /mnd in any form . . Have had clean emg to prove it . And thats good enough for me . . Both my points here lead to the same conclusion . . Slurred speech (and even tongue fasciculation )does not automatically mean als . . And a clean emg almost certainly dont either . . SO BE HAPPY! i wish you luck god bless . . Alex . . Ps sorry about the sloppy text but i am sneakily doing this at work . .

 

[SEproud]

thank you alex, notme, and helen

 

[SEproud]

ALEX, did they do an EMG on your tongue? I had an EMG on my arm, entire arm lower and upper. When I told the Dr about my symptoms, tongue feeling think, lispy speech, the bulbar stuff he told the technician to test the Trapezius muscles. I don't know anything about neurology, i asked the technician (she said she had been there 25 years) why he wasn't testing my tongue and she said that the facial nerves are riskier to test, you can do some damage there, so unless there are clinical symptoms or EMG signs pointing them there they don't just go sticking things in your face. I think this is what makes me worry? I hope the Trapezius (neck shoulder I think?) would tell them if that I am ok.

 

[twinmommie72]

You need a spanking! Haha! You were cleared by one of the best ALS specialist on the East Coast! You were given the golden ticket to see your children grow up. If I received that good news...I would stand at the toll booth & kiss everyone passing through. Embrace the blessing of hearing "You DON'T have ALS".

Hugs always