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concernedinOhio

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Mar 26, 2011
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Learn about ALS
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Ohio
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Delaware
Having been to my GP and a Neurologist and now awaiting an EMG, I am looking for some insight from those who have been through this before and hope you'll indulge a bit of back story.

I'm a 35 year-old father of two. About eight weeks ago I thought I was detecting some oddness in my speech. As an attorney, I'm talking pretty much all day and sensed that I was having some elongated S's. I'm not sure whether I would call that slurred speech or not. Neither my co-workers nor my wife and children noticed anything odd.
After about four weeks, I called my doctor. He did a quick examination in the office and, noting I had no signs of muscle weakness ordered blood work and a head CT. Both were normal and he told me "no follow-up is necessary". I wasn't satisfied with that answer and he referred me to a neurologist.
My Neuro appointment was eight days ago. The neurologist conducted what seemed to be a very thorough exam in her office. She noted no weakness or atrophy of my tongue or facial muscles and also noted no speech issues (and I didn't feel they were present in her office). She told me that she thought I was fine, but considering my high anxiety level she would order an EMG for my piece of mind.
The speech problems continue. They seem to be confined to the letter S in combination with other consonant sounds- ST, RS, etc. Words like "first" are the worst and feel flattened out at the back of my tongue. Even when I feel like I've slurred a word and point it out to my wife she says it sounded totally normal to her.
About five days ago I started to notice that I was hoarse at various times throughout the day and that I'm doing a LOT of throat clearing particularly in the 30-60 minutes after eating. I'm not having any trouble swallowing nor am I choking when eating, etc. I am clearing gunk out of my throat at times. The trouble does not occur after every meal, but after many and there is some dry cough too.
I should point out that I am very anxious about this and the potential for my anxiety to make these symptoms worse is very real. What the neuro noted eight days ago remains true. I can stick out my tongue, touch it to the roof of my mouth, swish it quickly from side to side, pooch out my cheeks with it, curl it, roll my R's with it, etc. I can recite tongue twisters and such. Today I even served as the narrator for a concert being done by my local symphony and while I got lots of pats on the back for that, no one said anything about my speech. In fact, when I'm able to concentrate on something else, my speech seems normal, then later it seems awful again.
I was ready to stop worrying, but then the hoarseness, coughing and throat clearing started and now I'm as anxious as before the neuro appointment. EMG is on April 7th.
Any insight that can be provided by those who know more about this than me would be greatly appreciated. Thank you in advance for your wonderful assistance!
 
I would consider more common possible causes of hoarseness, throat clearing and coughing such as acid reflux. With your profession which can be high stress and your current high anxiety level, I would try taking something like Pepcid or Zantac for a few days and see if this alleviates your symptoms. Nothing you describe sounds like bulbar ALS to me. Best of luck and give the antacids a try. Acid refux can present those symptoms.
Laurel
 
Uhhh, other people would hear that you are slurring your words!

Sounds like anxiety and sinus problems!
 
Thank you both (the tag 'Extremely Helpful Member' was never truer). It's hard to think rationally about these things when any information you try to search about slurred speech brings you to ALS and any search about constant throat clearing after eating does the same. It's also hard to be logical about it when at times it seems to me like my words are so garbled. Your knowledgeable words of assurance are greatly appreciated.
 
Thank you both (the tag 'Extremely Helpful Member' was never truer). It's hard to think rationally about these things when any information you try to search about slurred speech brings you to ALS and any search about constant throat clearing after eating does the same. It's also hard to be logical about it when at times it seems to me like my words are so garbled. Your knowledgeable words of assurance are greatly appreciated.

Stop reading about rare diseases on the Internet, especially when level-headed people around you (your wife, colleagues, and two doctors, one a trained neurologist) tell you that your speech sounds fine to them, and you won't have problems thinking logically.

You wouldn't recommend that someone do a lawyer-type thing based solely on information that they gathered for themselves on the Internet. What makes you think that you are qualified to do doctor-type things (diagnosing yourself) based on a few hours of Internet research?
 
You're quite right, trfogey and people doing their own legal work is often a problem- the comparison isn't lost on me. The neurologist even mentioned that the more educated her patients are the more likely they are to get stuck on a catastrophic wrong diagnosis. I recall as a child watching the struggle that my grandmother and her siblings had caring for my great aunt after her ALS diagnosis. I'm sure that experience is what led my mind into this arena when I began to notice my speech oddities. I also neglected to mention that I've lost about 5 pounds in the last 6-8 weeks. Gaining and dropping about 5 pounds between winter and summer is not odd for me, but it's never happened this early in the spring. Perhaps this also attributable to anxiety.

If you'll all indulge me, I'm going to ask a couple of follow-up questions (always the lawyer, I suppose) and then I'll leave you be.

1. From what I see in other posts on this site, I'm in a large group of people in the "did I notice this and go to the doctor too soon for the doc to see anything" category. It appears that when it comes to muscle wasting and particularly to the EMG there is no "too soon" if the doctor knows what they're doing. My neuro said even if it was very early on she would see physical changes in my tongue that were not present. I'm curious if this is the experience others have had.
2. There also seems to be much discussion on the site about the efficacy of EMGs in bulbar onset, though it appears from my perusal of other posts that if the EMG is done properly, it should catch any abnormalities. My neuro said, sarcastically, that if I was still concerned about ALS after a good EMG then I needed to see a different doctor- the kind with a couch. I'm assuming that unless there are progressing or new symptoms there is no reason to go back in six months for another test, etc.

I have to say that having navigated around this site, I'm amazed at what a wonderful group of supportive, informative and caring people are here. Thank you immensely to those who responded to my probably unnecessary questions. Your feedback and your personal stories are very, very helpful and greatly appreciated. God bless.
 
Basically, ALS symptoms (or any MND) aren't subjective, they're objective. In fact, you are much more likely to have objective symptoms you don't subjectively notice than the alternative!

As a PLSer, I get to sit plateaud at "very minor bulbar", so I have a good eye on what it looks like at the beginning. The hoarseness isn't something I noticed: it was being constantly asked by anyone who called if I was sick. I didn't know I had tongue weakness until a speech pathologist strength tested it. I don't fully finish my swallows, but I feel like I have and it is a struggle to remember there is still food back there to be dealt with. My max volume is "loud inside voice", and I found out by the dint of having my loving family not respond to my cries for help. I don't have slurred speech, that takes a lot longer in PLS, but from every account here I won't notice that either - my family and friends will.

When you're anxious, it is incredibly important for you to be able to trust someone close to you, but not you, to tell you when to worry and follow up on that worry. For me, that's my sister. I keep her up to date on how I feel, and she overrules my irrational dislike of doctor appointments to make me go when it's warranted. For you on the other side, pick someone (your wife, if possible) and actively work to trust her judgement. She'll notice if you have objective symptoms, and give you a rational arbiter of when more medical junk is called for.
 
I am a bulbarian, and if you are slurring and can't enunciate certain letters of the alphabet, your hearers will definitely notice. I would look into seeing an ENT specialist.
 
1. From what I see in other posts on this site, I'm in a large group of people in the "did I notice this and go to the doctor too soon for the doc to see anything" category. It appears that when it comes to muscle wasting and particularly to the EMG there is no "too soon" if the doctor knows what they're doing. My neuro said even if it was very early on she would see physical changes in my tongue that were not present. I'm curious if this is the experience others have had.

Yes, that is true. There would be visible changes in the way your tongue moves that any trained person could see.

And being in the "did I go to the doctor too soon" group around here is a sign of how little you really know about the disease. It's actually worse than knowing nothing about the disease because you have false information to unlearn before you can assimilate the true information. Sort of like believing that the Sun revolves around the Earth because you see it move across the sky every day.

2. There also seems to be much discussion on the site about the efficacy of EMGs in bulbar onset, though it appears from my perusal of other posts that if the EMG is done properly, it should catch any abnormalities. My neuro said, sarcastically, that if I was still concerned about ALS after a good EMG then I needed to see a different doctor- the kind with a couch. I'm assuming that unless there are progressing or new symptoms there is no reason to go back in six months for another test, etc.

Still playing Internet doctor? You should follow your neuro's advice and not what you have read here on any question of tests to be administered, if and how often to follow up in the future, etc.

And there is no question about the efficacy of EMGs in the ALS diagnostic process. A good many folks like you have baten that dead horse for years, yet the horse remains. Doubting the EMG results is prima facie evidence of a need to see the doctors with couches, just as your neuro said.
 
Odd..I noticed the S thing today trying to use the word sustained.. I couldn't spit out anything past sus..s..s..s so I gave up and said..keep on doing the same thing.. I never had that problem before..
Just thought I would chirp in.. Just one new word I can't spit out now.. I'm developing a stutter with just certain words with ses, sus, sos or whatever.. I guess I just need some new words I can pronounce.. Time to refresh my internal thesaurus. Good thing I didn't have to say it..
 
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