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Old 11-29-2011, 07:04 AM   #1 (permalink)
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Default Does this sound like Bulbar Als

Hi everybody

I have been lurking here for a while and havnt really had the courage to post until now.
My symptoms started about 8 weeks ago, one day I was at work and thought I was slightly slurring my 's' sounds in so far as they sounded a little elongated. I then started to do so some research an of course ended up with Bulbar Onset MND. I went to my doctor who felt I was fine as I didnt have any tongue fasticulations when he looked at my tongue (thats all he did though).
After than appointment - I looked at my tongue constantly for about 3 weeks and it twitched every time, however I dont believe it twitches when it is rested in my mouth. I dont know what atrophy looks like but I definately have teeth marks on my tongue but I dont think that is a sign of atrophy from what I have read. There is a dent on one side of tongue but I have no idea how long it is there. When I stick my tongue out it doesnt deviate to one side, but if I put my mouth around i, it deviates at the dent (kind of bends) - this is at the tip.
I think my speech is getting worse (my husband tells me that I am speaking like I always do but I dont think so) my s sounds are very elongated and also if I say words with 'ts' or 'Ls' it kind of feels that my tongue is hitting off the top of my mouth and words are not coming out correctly. This happens a few times a day at this stage. If I speak for any period of time at all my tongue feels tired - underneath where it is attached, that muscle starts to feel tired or hurt a little I guess I am not sure what the exact feeling is.

I am also really anxious about this and of course I realise that could be exacerbating the problem greatly, my rational mind is telling that I am fine but it is also telling me that there's not a whole lot else that could be causing my speech issues. Initially I thought it was a yeast infection in my mouth but that has cleared up, my tongue feels big in my mouth so I dont know if it is enlarged or if I am just concious of it being there 24/7. My mouth is also a little dry. I am 38 years old and have three kids and I suppose the thoughts that this could be something like MND is making my anxiety a lot worse.

My question like so many other people on here - does this sound like Bulbar onset MND and what are the usual signs in relation to speech being a little off.

Many thanks for reading this.

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Old 11-29-2011, 07:56 AM   #2 (permalink)
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Default Re: Does this sound like Bulbar Als

To answer the question in the title of your post, no, what you have described here does not sound like ALS.

The typical description of the early speech problems caused by bulbar ALS likens them to the way alcohol intoxication affects speech. Early bulbar patients are often asked if they have been drinking. In some cases, the voice becomes very nasal in tone early on in progression, but that manifestation appears to be more rare.

Trust your husband's judgment -- if he says you sound like you always have, then it is very unlikely that you are having any real problems. And be very careful about looking up vague medical complaints on the Internet. As you have discovered from this misadventure, there is a lot of misinformation about some scary diseases out there and it's easy for certain folks to get sucked into a negative state of mind because they don't know enough to sort the true statements from the false and the relevant from the irrelevant.

Finally, some of the more recent tongue problems (soreness, stiffness, etc.) are probably being caused by all the self-testing and self-examination that you are doing. Just like any other muscle in your body, if you overwork your tongue (which you are doing in your frenetic search for bulbar symptoms), it will protest the mistreatment by becoming stiff and sore, which may cause other problems with speech or tongue movement. You might consider stopping all the self-testing for a couple of weeks and let your tongue heal from this unaccustomed exertion. Maybe some of the more recent concerns will go away if you let your tongue get back to its normal level of activity.

Good luck to you as you get on with your life again.
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Old 11-29-2011, 08:36 AM   #3 (permalink)
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Default Re: Does this sound like Bulbar Als

Thank you so much for your response - its just what I needed to hear. Wishing you the very best.
Polly
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Old 11-29-2011, 09:47 AM   #4 (permalink)
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Default Re: Does this sound like Bulbar Als

Hi Polly, TR is so right, don't let yourself get sucked in as I did. I went through hell with the definate thought that I had ALS. I went to 4 neuros, 2 were ALS specialists, 3 emg's and they all said "no ALS" as everyone had told me on this forum. These people really do know there stuff because they have ALS and and are kind enough to try to help us.
I have many of the symptems that you do, feel like im slurring some words (not in the way it would with ALS as in drunk sounding) also my husband, or no one else notices it. My tongue feels "tired feeling " also. It twiches, but only when I stick it out, but many peoples twitch when they stick it out. The neuros are only concerned (anyone can correct me if Im wrong) is when the twiches are at rest. I really havent figured out what it is, but I know what it isn't and thats ALS. Please don't get to the point where I was, actually laying in bed crying for months, it was horrible what I put myself through, and my family. Go to a neuro, which will hopefully make you feel better, my advice would be to believe what they say. Oh, what also helped me was when I went I brought a small tape recorder, so when ever als popped into my mindm I have the tape telling me "no you don't!
Good luck, Kathy
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Old 11-29-2011, 09:59 AM   #5 (permalink)
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Default Re: Does this sound like Bulbar Als

If others voluntarily say that you sound drunk then MAYBE but if it's only you thinking thst you're slurring then it's likely your anxiety working on your head. And by voluntarily I don't mean you asking, I mean them commenting with no prompting from you. With me it was my wife who noticed it before me.
Also don't obsess with looking at your tongue, they always look funny anyway and you'll drive yourself crazy trying to figure out this dent and that ridge.

Good luck
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Old 11-30-2011, 04:16 AM   #6 (permalink)
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Default Re: Does this sound like Bulbar Als

Thank you all - Kathylund you are so right I am constantly obsessing about ALS and it is driving me and my husband mad. I am slightly improving with each day as I am now making a concious effort to try and forget about it. In relation to the speech thing it had got so bad a week ago that I was mentally saying everything before I actually said it and I was putting off speaking unless spoken to, I would then analyse every word that I did say and wonder if I slurred my words. All that on top of hours looking at my tongue - its exhausting. I read on here that if there is no weakness there is no ALS and I am holding on to that.
Thank you all again for responding so kindly to my post which is probably similar to 1000s you have seen before.
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Old 11-30-2011, 06:08 AM   #7 (permalink)
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Default Re: Does this sound like Bulbar Als

You poor thing. Don't worry til it time to worry. My father had Bulbar Palsy, passed in 09. Six months after dad died I was having the same problem (I am 47) slurred on s's. Voice cutting in and out. I did not go to the Dr for 6 months. If I had what my dad had I did not want to know and kind of living life to the fullest (easier said then done)So I heard about Ray Rice /Ravens had a throat infection and lost his voice.I am also a smoker... So I went to the ENT Doc, he knew my dad and my concerns....
Come to find out after he put a scope down (don't hurt ) I had inflamation in my voice box from a cold 6 months before, it was being aggravated by acid reflux that I did not even know I had. He told me to take Zantac. (over the counter) I am fine now . Don't look at the worse, it could be soooo many other things. Good Luck and keep us posted
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Old 12-01-2011, 08:56 AM   #8 (permalink)
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Default Re: Does this sound like Bulbar Als

The people on this forum are a huge help for people like me who are struggling with the fear of ALS. I too feel like I am having bulbar like symptoms with the "s" sound not coming out of my mouth right, especially words that end in "s". Also having issues with some "th" sounds.

I've had constant muscle twitching throughout my body since June. It started at the corner of my mouth and is still very prominent there. That's the one area that I can actually cause the twich to occur just by the way I move my mouth and tongue. It is also prominent in both my calves but I feel the twitches throughout my body. I also feel a "crampy" feeling under my chin and feel like my tongue is too big in my mouth. I also have mornings when I wake up with a sore jaw. I hope it is strictly due to anxiety about ALS.

I've been seen by a neurologist (because of the twitching) who did a clinical exam as well as a NVC and EMG on all limbs, tongue, face, and neck. Of course, I did not twitch during the EMG and he told me he found nothing abnormal. The clinical exam was also normal but that did not surprise me as I have not noticed any weakness. Blood work was also normal.

I've mentioned my speech concerns to my wife numerous times and she told me that she has not noticed anything different and that she would definitely tell me if she did. I am going through the same things as Polly13.....mentally saying everything before I speak it, avoiding conversation unless absolutely necessary, and taping myself talking so I can listen to make sure I sound normal.

Can anxiety be the sole cause of what I am experiencing? Is a clea EMG on the tongue and face enough to rule out bulbar als?
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Old 12-01-2011, 09:25 AM   #9 (permalink)
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Default Re: Does this sound like Bulbar Als

A clean EMG means NO ALS. My EMG picked up fasiculations in my arm long before I could feel any twitching. It's amazing what anxiety can do to one's body.
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Old 12-01-2011, 12:05 PM   #10 (permalink)
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Default Re: Does this sound like Bulbar Als

Thanks. I know some will be offended by this question and I apologize for that.

What are the chances of a trained neurologist mis-reading an EMG? In the back of my mind, I feel like my neurologist rushed through the EMG...although I didn't need the needle sticking in me any longer than normal. In respect to the bulbar area, he stuck me under my chin at 2 different spots, once on my tongue itself, on my cheek, my forehead, and the back of my neck. Is that sufficient?

I am not an expert in EMG's. I do realize that the neurologist I am seeing has been schooled/trained and has been practicing for a number of years. He is not a "rookie" by any means but he is a small hospital neurologist and would not be considered an expert with regards to ALS.

I hate the fact that I am second guessing him with regards to the bulbar area. I've stopped worrying about the twitching in the calves and arms. The EMG on my limbs was clean as well and I am definitley not experiencing any weakness. I'm just having a difficult time with the bulbar thing due to the speech issues I perceive to be having.

Again, I apologize if my question and worrying/doubting has offended anyone. I'm just trying and hoping to work through this.
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Old 12-01-2011, 12:15 PM   #11 (permalink)
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Default Re: Does this sound like Bulbar Als

todd18,

Please open your own thread if you wish to engage in extended dialog about your personal case. What happens to you has nothing to do with KITT, so please have the courtesy to stop hijacking KITT's thread.
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Old 12-01-2011, 12:55 PM   #12 (permalink)
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Default Re: Does this sound like Bulbar Als

You are absolutely right. I apologize for that.
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Old 12-01-2011, 02:05 PM   #13 (permalink)
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Default Re: Does this sound like Bulbar Als

When I was diagnosed with Bulbar MND I had total loss of intelligible speech, mouth clamping shut and teeth chatter. That was all. No fasciculations, no loss of swallowing ability, no loss of strength.. nothing.
My symptoms got worse straight after diagnosis. I sometimes think we create part of the symptoms in our mind, then the body reproduces what we think.. if you get what I mean.
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Old 12-01-2011, 02:36 PM   #14 (permalink)
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Default Re: Does this sound like Bulbar Als

I think you are right Paul. I was doing internet research on ALS and read about twitcing, then the next day started having them. Anxiety can do some wild things to you.
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Old 12-05-2011, 03:59 AM   #15 (permalink)
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Default Re: Does this sound like Bulbar Als

Todd - I know how you feel, I was feeling a little better towards the end of last week, but yesterday I felt all my symptoms were back in full force - particularly the s sounds. So apologies to all of you again but are the ALS symtoms intermittant or are they constant? I also have some new symtoms whereby when I tongue is resting I am biting down on the edges of it all the time so it has a horrible scalloped appearance around the edges.
Thanks again for all your support
Polly

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