Fasciculations and then Bulbar ALS?

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Fasciculations and then Bulbar ALS?

Postby YYYYT on March 15th, 2004, 7:00 pm

This is 7Roger. It's a long story, but this is my actual registered name.

I started having widespread fascics a few months ago, then sometime along the line I started having to clear my throat all the time, occuring with post nasal drip. I then had really bad shortness of breath, and worse when I was laying down, sometimes it was worsened by anxiety. I was convinced that I had the breathing difficulties of ALS. Then, the breathing difficulties stopped. I can take deep breaths laying down, yawn, and can sleep as well.

I developed a cough, it's a deep chesty cough. But I can't seem to cough anything out. I know those with bulbar-onset have a "weak cough". I've never seen a description about what exactly a weak cough is. I looked online about ALS and some sites said "ineffective cough", and that scares the heck out of me. The post nasal drip is continuous.

It feels like phlegm that just won't break up. Sometimes after I eat a greasey meal, I will get the rattling in my chest and cough up a little bit of phlegm. I want to get rid of this phlegm because after a while, I start getting horse, either because of phlegm or because I cough too much.

I don't notice any weakness. Except lately I've had a lot of "say it, don't spray it" moments, but I'm not slurring speech. What causes excess saliva in ALS, the inability to swallow? I don't notice any weakness of the lower facial muscles, or the tongue. Is this the beginning of speech difficulty?

I've read a lot of stories about, "it started with" this or that, with bulbar. I read something on the old harvard archive about a woman who had fascics and cramping for a year, and then developed bulbar.
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Postby uber on March 15th, 2004, 7:43 pm

I get this all the time...but I smoke...so that probably the reason im chest/throat is screwed.
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Postby Jenn311 on March 15th, 2004, 8:23 pm

Hey Rog...

There are lots of things that can cause you to have a cough...maybe you have an undetected low-level sinus infection, or it could even be caused by acid reflux in your esophogus (strange as it sounds, it's the cause of a large number of chronic coughs...) But only a doctor can determine the cause, so you need to go see one.

As for fasics or twitching, there are many things that can cause them. ALS, already very rare, hardly ever starts out with fasics. Again, if you haven't been seen by a neuro, you may want to go in and have a thurough exam and possibly an EMG to rule out anything nasty. But as long as you can still swallow, talk, project your voice, move your tongue, I think bulbar onset ALS is not very likely at all, as it is the fastest moving of all types of ALS and is quickly fatal.

Hope this helps! I know well how stressful twitching can be and the mind games they can play on you!

J :wink:
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Postby Arron on March 15th, 2004, 8:54 pm

Hi ya Roger, you said "I read something on the old harvard archive about a woman who had fascics and cramping for a year, and then developed bulbar."

You have to keep in mind that ALS is extremely rare. It is so rare that a regular doctor might not suspect it and might just blow it off as something minor. Most GP's never even see a real case of ALS in the life time of their practicing, so it is indeed rare, and with that, it can be overlooked in SOME incidences, which would "appear" to make it (on paper statistics that don't give the WHOLE story) that it took a year for it to "develop", when indeed, an EMG at the first onset of symptoms WOULD have shown abnormalities, without a doubt.

Besides, one can have a benign "cough" (allergies, smoking, PND, or whatever) and THEN develop cancer a year later. Was it related or caused by the coughing? No. Did it have anything to do with the coughing? Probably not. Well... in the case of that ONE woman you read about in some old archive, could she just have had a simple cough and later-on her lucky number came-up and she just happened to develop ALS? Just because you have one symptom, dopesn't mean you will or won't get another, which may or may not have anything to do with each other.

There are all kinds of "studies" taken out of context. We see it with alomst every cancer study. Sacchrin causes cancer... no wait, now it doesn't. Aspertame causes cancer and brain tumors and central nervous system damage, no wait, that study was wrong too now. Coffee can cause colon or bladder cancer... no wait, now they said it can PREVENT those.

Smoking causes lung cancer, so why do new born babies get it too, when they don;t smoke and neither did their parents? If all of this stuff causes cancer, why is the Childrens Cancer Institure full of KIDS that don't smoke, don't drink sodas, don't drink coffee or alcohol, aren't around toxic chemicals or solvents or ANY of the so called cancer causer's, yet they ALL have cancer? It's because most tests say just about ANYTHING can (and will) cause cancer if induced in large quantities, AND it can happen genitically without any known causes.

You have to take everything within context, which includes ALS studies.

Did that lady ever have an EMG or was it as year later that her GP finally figured-out that maybe she ought to go see a REAL specialist? We see the same scenario with the Mayo Clinic data where it claimed some people presented with fasciculations only, (leaving out that they did NOT have an EMG to prove one way or the other), or that some people took 13 and 18 months before they were diagnoised with ALS. Well yeah, if your doctor slacks and says to not worry about it and is ignoring TRUE symptoms, such as weakness, atrophy and inability to function, and then they don't perform an EMG, it would "appear" it took 18 months to diagnose, but in reality, an EMG would have said for sure, (one way or the otherr) at the first sign of symptoms, NOT 18 months later, but on paper, without all of the details, it "appears" it took 18 months.

It's all in how you look at it. Just because the "Mayo Clinic" or "a neuro" says something in some report, doesn't make it so, if ALL of the data and details aren't taken into context.

If you are having doubt, go get an EMG and be done with it. You'll feel MUCH better after you did, and then you can move-on and not be here worrying all of the time like many of us still do.
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Postby Nole on March 16th, 2004, 3:25 pm

Gerd will also cause symptoms that you have mentioned, especially after greasy foods. Gastro esophogeal relfux disease can cause a variety of symptoms from chest pains, to coughs, phlem, heartburn, believe I have had them all. You may want have this checked out also, change your diet to healthier foods, and see how you feel. This is not curable but can be managed with diet and drugs. I doubt you have ALS.
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Postby Nole on March 16th, 2004, 3:31 pm

Also, shortness of breath is very common in gerd and laying down will increase this symptom. I thought I was asthmatic, but I wasnt, the reflux can drip into your lungs causing shortnessof breath. Try raising your bed 2-4 inches at the head. Your symptoms seen very similar to mine, I started to twitch 2 years ago and was diagnosed with GERD/Hiatal hernia last year. I thought I was dying I was in soooooooo much pain in distress. The two are not related either. Im not saying you have this but it is worth taking a look at. I pretty confident you dont have ALS.
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Postby Nole on March 16th, 2004, 3:34 pm

Excess saliva, also a symptom of Gerd, so is a feeling of a limp in your throat or an inabilty to swallow. This may be a gastrointestinal problem you are dealing with rather than ALS!
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Postby YYYYT on March 16th, 2004, 9:33 pm

actually the breathing problems ceased a few weeks ago, and I'm not exactly sure if I do have excess saliva. Last night while I was sleeping, my mouth was as dry as sand. I have had reflux before, and there is a similar thing going on, but I don't think that is what this is. I do have difficulty belching at times, but I don't notice difficulty swalling. I suspect I am aspirating because I keep coughing.

I don't want to jinx myself, but I'm pretty sure the fasciculations are caused by other things. The "fatigue" in my arm has been absent for days now, so I'm really confused.
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Postby Jenn311 on March 16th, 2004, 11:23 pm

Sleeping with your mouth open can be a sign of allergies, cold,or sinus infection. HAve you persued those avenues?

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