Re: BFS and Bulbar Symptoms

Posted By Mike on April 26, 1999 at 10:22:47

I began having widespread fascics about 4 months ago and like most of the others who post here went throught the initial ALS panic stage.  I saw a Neuro and had an EMG, MRI, and bloodwork all of which were negative. He assured me that I did not have anything life-threatening, prescribed Xanax, and sent me on my way.  My symptoms had actually improved until about 3 weeks ago when I started getting a "lump in the throat/gripping feeling, tightness in the muscles under my tongue, and what I perceive to be increased saliva production at times.  I have not had any problems swallowing food/liquids, speaking, etc but swallowing does sometimes feel awkward, at times it feels as though there's mucous built-up in the vicinity of my adams-apple that I can't eliminate
I realize this is probably Globus (sp?), and the last thing I want to do is make another appt. w/a neuro for what I hope is anxiety/BFS related. I should also point out that I had GERD appx 6 months ago and I understand that this can also cause these problems.  What I would like to know is what actually happens during bulbar-onset ALS ? Is there a lump in the throat sensation along w/difficulties speaking/swallowing ?  Is there any way to differentiate between what I've desribed and bulbar-onset ALS?
Thank You    

[anonymous-user__0]

Posted By Similar Problems in KY. Help me too? on April 26, 1999 at 11:31:56
I've had widespread fascis and muscle fatigue for a couple of months now.  Given my age and lack of profound weakness, I'm pretty darn sure it's BFS (I have a neuro apt next month).  Anyway, I'm having tongue problems also that I was hoping someone could comment on as well.  
I'm not really slurring alot.  I do occassionally but, honestly, we probably all do occassionally.  My biggest problem is this "fat tongue" feeling.  It can get really difficult to talk...especially hard to say "s" sounds because my tongue feels almost too big to let the air pass by it to make the sound.  Also, off and on for a few weeks, I've been having some nasty tongue pain as if I've sprained it.  Trust me, I'm not doing anything unusual with my tongue.
These problems are not constant.  They come and go which, I guess, is reassurring since anything serius, from what I understand, would be constant.
I also have: pain in the back of my neck and down the center of my back, very occasional tongue twitching, mucus build-up (it's allergy season)
I don't have: lump in throat, difficulty swallowing

[kirby-dean]

Posted By kirby dean on April 26, 1999 at 14:50:55
This probably wont make anyone feel any better but I have experienced nearly all the typical ALS symptoms for over a month now. I began with fasiculations all over which led to the lump in the throat which lead to thick speech which lead to a perceived shortness of breath  etc. etc. I have researched every web site and medical book I could get my hands on and the more symptoms I have discovered the more I have seemingly experienced. I saw a neurologist who at my request administered an EMG which came out completely normal. I still lift weights 3x a week and run 3-5 miles 4x a week and have noticed no weakness or decrease in performance. I'm not saying that I wont find out that I have ALS at some point but I have finally realized just how powerful the brain can become when you start to believe that you have something wrong with you. The more things that I can wrap myself up in doing the better I feel because the less time I have to spend just thinking about my ALS symptoms. I've just put it in God's hands and am accepting that I dont control my own destiny He does. I guess the main thing I'm saying is that there are an unbelievable number of 'us' out here who are dealing with the same fears that you are--atleast you're not alone.
                                      Kirby










Follow Ups:


Re: BFS and Bulbar Symptoms rob with same symptoms 4/27/1999
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BFS and Bulbar Symptoms MIKE 4/28/1999
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Re: BFS and Bulbar Symptoms CCF MD... 4/28/1999
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