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Happyphysicist

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Surprised at myself for writing but I just have to. I want to thank the brave members of this group before subjecting you to my posting. I

I am a 44 year old male.

About 9 months ago I noticed that speaking became an effort. Currently whenever I speak it reminds me of when I was a naughty teen ager and would come home inebriated and try to sound sober as I spoke to my parents. Focusing on each word trying hard to make it come out right. To date no one has noticed whatsoever. In fact I have spoken about it to a few close friends and they say they notice nothing whatsoever abnormal about my speech. But I work very hard to make myself sound normal. I spend a good part of my day talking about complex technical issues so it is appropriate for me to speak very slowly (which I have to do to avoid sounding drunk). I think most people think I am being condescending if anything. But every day I dread the conversations I will have and worry about how I am going to get through them. After an hour of speaking I am exhausted.

I seem to always have too much saliva in my mouth and need to swallow constantly, which just adds to the challenge of speaking. I don't know whether I swallow more or if it is that the act of swallowing is now a conscious concerted effort like talking and I am reluctant to do it.

I choke on my food almost every time I eat (or drink). Very embarrassing. I have found myself taking smaller bites and eating less. I am beginning to dread eating in addition to speaking.

I have chipped my front teeth on each other while eating a total of 4 times in the last 4 months. Usually while eating soft food like pasta.

About two weeks ago my facial muscles started twitching. This involved my lips, chin and nose. They have stopped for now but they were driving me a little crazy and I was becoming very irritable because of them. It was torture.

During this episode I stuck my tongue out one day while watching my facial twitching and was shocked by what I saw. My tongue looked like a bag of worms, twitching furiously. This symptom has not gone away and I have no idea how long it has been going on. Even when my tongue is in and at rest it is still twitching madly. It looks like popcorn, twitching in random places, several times a second all over, sudden sharp tugs in my tongue muscles. My wife has been rolling her eyes at my complaints over the past few months until she saw my tongue. Now she is a little concerned.

Now this next one is odd, please don't laugh but it is yet another thing that has changed lately. When I sneeze it seems to be forced through my nose entirely and it is invariably a messy affair. I can't just have a simple little sneeze anymore. Its like my mouth and cheeks are in the way. It would be like sneezing while covering your mouth. Try it sometime and you'll know what I mean.

When I laugh now I snort like a character from Revenge of the Nerds.

I know, I know, this is all silly but all these little things have shown up over the last 9 months or so. Any one of them or even all of them I would just attribute to getting old. Its just that tongue quivering that has got me worried and what lead me here. If I google difficulty with speech and quivering tongue ALS is always the first thing that comes up.

I'll make an appointment with a primary care physician tomorrow and go from there. I just needed to post it and get someone's thoughts who has experience with ALS.

Now that my wife is researching this online she might stumble across this post. And hopefully years down the road she will ridicule me in front of our friends at a party with "and he even posted his symptoms on an ALS discussion board". That is the future I am desperately hoping for.
 
I forgot to add that I can't reach my back teeth or the back of the roof of my mouth anymore. I used to feel the sharp edge of one of my back teeth and the bump on the roof of my mouth with my tongue every now and then. Now I cannot get near that tooth or the roof my mouth.
 
If I had bulbar symptoms, I would gladly speak up, but as I don't, just want to tell you that the forum is slow in the morning. I hope you get an appropriate answer soon. And, I think going to your GP is appropriate, so making that appointment is in order. And, I am so sorry you're experiencing this difficulty.
Ann
 
Thanks. The first available appt with the GP is over a month away and the neurologist will only see me with a referral.
 
Ouch. That's longer than I'd have hoped for you to have to wait. Do you have walk-in places in your area, used in place of a hospital ER? I wonder if that would be another way to get a referral. I don't know, obviously. Perhaps by calling first you could find out, and see about a short cut.
 
HappyP,

IMO you should try another route to get you to see the neurologist. If you make an appointment with an ENT that should gain you the wanted referral. The ENT can also perform some preliminary tests to get a better handle as to what might be at the root of your problems.

Keep in mind that the more you focus on what worries you, the more prominent problems (perceived as well as clinically observable) will be. For example, you talk about having too much saliva, and the need to swallow all of the time. This is not a symptom of bulbar weakness (what ALS is, in a nutshell) but, it is a common manifestation of anxiety. When you read about bulbar onset ALS patients having excessive saliva, it is due to swallowing less, and less efficiently, and it gets all thick and ropey and generally just plain gross.

The fact that you notice an effort to talk clearly is also more often associated with anxiety than bulbar weakness. Most bulbar folks don't notice it, its others around them that point it out to them.

The fasciculations in your tongue and your face are not in and of themselves something terribly ominous.

However, not being able to move your tongue to the extent you once were able to is not normal, and of course if your tongue is moving around while at rest in your mouth, that is not either.

Be careful of self diagnosing though. By you remarking that your tongue looks like a "bag of worms" makes me suspect that you came up with that description by reading up on bulbar ALS. There's nothing at all wrong with reading up on it, and it is a very apt description of tongue fasciculations.

Unfortunately some of the causes of problems in this region come from the bulbar part of the brain stem, and can include structural interference (i.e. a tumor there). And, it is potential causes such as this that leads me to suggest you make an appointment with an ENT. and, DON'T try to lead him/her in any specific direction, leave out (my advice here) any new symptoms you noticed after your internet research, and rather tell the doctor about what has been infringing on what was a normal everyday life for you.

Good luck to you, let us know what you find out. I do hope this whole situation for you turns out to be good material for your wife at that future party you should throw after getting the good news from the doctor.
 
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Thanks for the advice. I just called a friend who is a physician. He was a bit alarmed when I described my symptoms and is calling in a referral now.
 
I am glad that you are going to be able to be looked at and hope it all works out well for you! Please let us know how it turns out.
 
Good, I'm glad your friend was able to help you out. Let us know.
 
rose,
Thanks for that. That is reassuring what you say about how most bulbar patients not noticing their own speech issue. I seem to be the only one who notices.
 
I am happy that you will get to be seen sooner, a month is too long a time to wait.
hoping for good diagnosis.blessings, Pat
 
Good luck buddy;

Sending positive thoughts your direction.
 
Saw the Neurologist today. He said "To be honest I am concerned about your tongue" He said he wants to make sure its not a tumor and go from there and he mentioned some muscle tests we could do if the MRI showed nothing. I assume he meant an EMG test. He never mentioned ALS but the test was ordered as "to rule out ALS" by the secretary. I have an MRI scheduled for this afternoon.

Thanks everyone for being my sounding board here. Somehow it is a real source of courage.
 
I'm so glad you have found this very quick help in testing. Don't be spooked by the "to rule out" phrase. I am wishing you the very best of outcomes.
Ann
 
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