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halfin

Senior member
Joined
Jun 29, 2009
Messages
540
Reason
PALS
Diagnosis
08/2009
Country
US
State
CA
City
Santa Barbara
About two months ago I noticed I was having problems with my speech. My mouth felt sluggish and uncooperative, my words were slow and slurred. I work at home and don't have occasion to talk that much so I didn't pay that much attention at first, but after a few days I realized it was new and a real change that wasn't going away. I mentioned it to my wife and she said she'd noticed that my voice had sounded strange for some time, weak and hoarse, and now this slowness.

I've been seeing a neurologist who has done many tests, most of which were thankfully negative. I haven't had a stroke, no brain tumor, doesn't appear to be MS or myasthenia gravis. However I have been having a lot of muscle twitches which started around the same time, almost constant in all my muscles. Maybe 4-5 a second throughout my whole body. The doctor did an EMG test a couple of weeks ago and found some polyphasic motor units. This could point to some kind of motor neuron disease of which the worst case would be ALS, but he emphasized that there are a wide variety of causes of this kind of thing, many of which are only very slowly progressive or even not at all.

I also saw a speech therapist because it really bothers me not to be able to talk quickly like I used to. He didn't think my speech was too bad but noticed that my breathing is rather weak (I can sing a note for only a few seconds) and also noticed the hoarseness. I'm seeing an ENT doctor on Tuesday to look at my throat area and see if something local is causing the hoarseness.

My neurologist has referred me to the UCLA medical clinic which has a specialization in neuromuscular disorders. I'll be seeing them in two weeks. Hopefully their experience will give me a better idea of what is going on and what to expect.

The good news is that my speech hasn't gotten any worse. The problem varies quite a bit, sometimes I hardly notice it, other times my wife says I almost sound like I'm drunk. But the fact that it's not progressing seems encouraging.

I just found this forum and although I of course hope not to have a serious problem like ALS, I have found the information here already to be very helpful.
 
Welcome to the forum halfin. I'm sure that you will find this place useful. The people here are great and will be willing to try to answer any questions that you might have. I hope that you get some info at the clinic and please let us know how it turns out.

Barry
 
Glad you found us, you are the kind of person that make's this forum the special place it is. We are here while you sort out this problem, and we will hope with you that it is one of a number of fixable things. We have a wonderful group of people, and have a ton of info. Good luck, and keep us updated.
 
Hello Halfin (curious about the meaning of your name?),

I hope you find your answers soon, and that they are manageable. I would like to echo Hoping's comments: you are the type of person this part of the forum is for; someone with real and documented issues, who is rational, who goes to a doctor for his diagnosed and not a bunch of cyber strangers, who comes here to share and provide/receive support during that process, etc etc etc....so welcome from one of the residents-in-limbo.

Lydia
 
Well said Lydia! My thoughts exactly.

Barry :)
 
Thank you all for the friendly welcome! My name is Hal and my last name is similar to Fin, that's how I chose my user name. BTW I forgot to mention my age; I'm 54.

Just got back from the ENT; she did not see anything wrong with my larynx that would cause hoarseness or speech problems. She thinks my issues are "functional", meaning I gather that things just aren't working right! Not as informative as I had hoped.

She also observed a lack of synchronization between my vocal chords and the rest of my mouth while speaking, particularly when I said the Peter Piper tongue twister. The voice phonation is not happening at exactly the right moments with respect to my mouth movements. I wonder if this may be the same kind of thing that is causing my articulation problems, a general feeling of clumsiness and slowness in my mouth and tongue.

Thanks to the links on this site, I've learned a lot about EMG testing. During my test a few weeks ago, the neurologist saw several cases of "polyphasic units" in certain of the muscles of my arms and legs. This refers to a muscle impulse which is kind of "messy" instead of firing cleanly at a specific instant. I'm thinking that this kind of messy or sloppy muscle firing might cause some timing problems in muscle action, particularly in areas where timing is very sensitive, like speech. And then this would be consistent with what the ENT saw today.

Even though the neurologist saw this effect in my limbs, I haven't particularly noticed any problems besides my mouth area. Typing involves a lot of closely timed, fine movements, and I'm not having any problems at all there. I'm actually quite active, I run and work out, and although I've had to cut back a bit lately due to some injuries, I don't have any problems with strength or coordination, in general.

When I read some of the descriptions of daily life on the boards here, it both breaks my heart at what people have to go through, and scares me to death that I might someday be in a similar situation. I really feel, based on the evidence and what the doctors are saying, that the odds are still in my favor. But I have to accept realistically that a worst-case scenario is not impossible. Today's news from the EMT could have been better; I would have felt quite relieved if she had spotted a polyp or some localized irritation that would explain some things. As it is, it's just one more symptom that I have to add to my list, that all seem to be related.

Anyway, next week I'm going to meet with my GP and pick up some medical records, then the following week I am going to UCLA (100 miles away) for what I gather is just a consultation and organizational meeting. It took them 6 weeks to schedule this appointment, I hope they will not take so long to schedule any follow-ups!

Thanks again for your support and kind words -

Hal
 
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