Need some advice/perceived "bulbar" stuff

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Need some advice/perceived "bulbar" stuff

Postby SLL on June 20th, 2004, 11:55 am

guys, can you all chime in and let me know:

1. Have you had the "bulbar" symtpoms thing along with your twitching? Which ones, pls explain.
2. Do you twitch in necks, throat, etc... a lot.
3. What have your doctor's all said about these complaints?
4. Did your EMGs include bulbar muscles?
5. Did you take anti-anxiety meds and have they helped these "bulbar" feelings?

I am getting lots of throat tightness, twitches and fear of course. I seem to be able to swallow OK, although I am avoiding food terrified I will choke...it feels like I will and then I do not. Water and tea go down fine, I am not slurring but of course I am now over-concentrating on every word, over- concentraing on every chew, and swallow...so now I have deemed that these things are all "more effort' for me. Viscious cycle.

My only emg 3 weeks ago was only right arm and right leg and was totally normal, as are all my recent neuro and ENT exams/visits. But now I ma all baout thinking bulbar - they did not do those muscles on the EMG and I am getting all these weird feelings....

I have a follow up on Tuesday with the neuro again.
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Postby SusanSid on June 20th, 2004, 3:17 pm

I suffer from a condition that makes my throat feel very tight. It ended up being a very benign condition called globus hysterics. It was so bad at one point I drove myself to an ER because I was sure my throat was closing up from an allergy....nope, was anxiety. This was my first anxiety attack many years ago.
Anxiety almost always will manisfest itself in a physical manner. It's our bodies way of getting our attention that we aren't handling stress very well. For some it's the GI tract, others it's obsessive thinking, on and on. A tight throat is very common and can be a frightening experience.
My doctor told me it's when the muscles in the throat tighten, not in a dangerous way, but become tight just like a shoulder muscle. Of course it sends a surge of adrenalin in the body only making it worse....then either a generalized panic feeling occurs ( a feeling of doom at any moment) or a full blown anxiety attack. Both are the pits to experience.

If you think your toe feels funny and you worry about it, think about it when you walk, sit etc., you will discover all kinds of symptoms that are strange in your mind, only it's due to fact that you are thinking of nothing else. This is obsessive thinking and it can interfere with ones quality of life. Our minds are so powerful.

What worked for me was reading about anxiety, there are some great books. I suck on a cough drop when my throat felt tight, which seems to help me. When I start to get the feeling of a tight throat, I access my stress level in my life...it is always an indicator that something is off, or I'm not addressing something that is botheIring me. I have had to learn how to stop the obsessive thinking too.

Please don't spend the hours worrying about how you are swollowing, monitoring every single thing you put in your mouth, reading about bulbar ALS...it is a waste of your time and energy. The throat tightening is something that is common with stress and it will go away. It also will not hurt you!

Hang in there, from one who experiences it.

Sue
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Postby puggriffey on June 20th, 2004, 7:59 pm

My throat tightens up on me all the time - it is quite annoying.

I have frequent neck and throat muscle twitches and jumps, which is bothersome too.

I have had on and off tongue twitches, sometimes so bad they literally pull my tongue to the side. (kind of hard to describe - it's not as bad as it sounds, but it's ind of like this)

Checked up and down - two EMG's, full neuro, endocrine workups by some great doctors...no abnormalities.

You generally do NOT need an EMG on bulbar muscles to detect bulbar onset ALS - the critical nerve "wires" that are impacted will virtually always present with abnormal findings in one or both arms, and more importantly, the neuro exam will virtually always present evidence of upper motor neuron damage once symptoms present. PS, though I have read otherwise in some (now doubtful) internet posts, my neuro said bulbar ALS almost never presents with sensory difficulty (i.e.: tightness feeling, pain, discomfort in throat area) - it's usually muscle and nerve failure/spasticity, producing unintelligible speech and/or impotent muscle response in the throat, causing choking/chronic coughing, difficulty breathing and difficulty retaining saliva (because you can't swallow it). Ever wonder why docs are so sure just by looking that we don't have bulbar ALS? Because apparently these people are in really, really bad shape by the time they know what has hit them, and the condition just gets worse and worse. My heart goes out to these people, and after learning this difficult fact, it made me realize just why there isn't much out there from confirmed bulbar ALS victims - they don't have much time, they have much more complicated things to think about, and they are in serious condition.

I hope this helps assure you that although many days you probably feel downright miserable, uncomfortable, and yes concerned, even your brief description virtually ensures you are not afflicted with this disease, and that your symptoms are far more benign.

Smile and enjoy your day!

JG
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Postby puggriffey on June 20th, 2004, 8:12 pm

PS: some anti-anxiety meds typically cause a brief uptick in anxiety and related conditions immediately after beginning taking them...though this condition is usually temporary, it can exacerbate the very things that are causing you concern (e.g.: tighten the throat, increase muscle pain/discomfort, etc.)

I've actually found my best remedy is to (believe it or not) have a nice long talk with someone - call up a friend or your parents and chat for 30-40 minutes (if it's on the phone, do NOT rest the phone between your ear and shoulder - use a headset or hold your neck straight!) Keep your mind off of your throat...even if it hurts in the beginning, it will subside. Also, a hot cup of (decaf) tea or coffee never hurts. I saw another post where someone suggested hot compresses on the neck - I've never tried, but can't say that's too bad an idea either.

My PT showed me the muscles involved - can't recall the name, but the form a triangle that attaches the chin bone to the sides of the Adam's apple/thyroid area - if you look in a PT manual, you will see a series of pressure/pain points triggered by these muscles, and you guessed it, they include the tongue, the sternoclemastoids (which are the big muscles that range into the back of your head and the ear area - do you sometimes get pain/discomfort in the back of your head behind the ears?) and other muscles you feel jumping around...no bulbar anything, just good old muscle fatigue and discomfort.

Last but not least, irritation of these muscle is FREQUENTLY caused by clenching/grinding/repetitive chewing of the teeth. If you mow through a bowl of corn chips for 10 minutes, you can trigger it. Same with grinding teeth in sleep, grinding teeth to swallow (which I found I do subconsciously when I have the tight throat feeling and I'm worried I'll choke). This can cause a vicious cycle - one you're probably in right now.

Hope you find relief!!!

JG
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To Puggriffey

Postby SLL on June 20th, 2004, 9:15 pm

so by the time twitching in the "bulbar" muscles if ALS you'd have some real issues, right? You hit it on the head where the discomfort is...that triangle from under the chin down to clavicles. I am just so upset - i got the EMG to make me feel better...then right after it all this stuff with the "bulbar" area....I want to put this behind me.

Interesting on the EMG...and I would imagine since I am twitching mostly elsewhere - legs, arms, calves, feet, etc... IF ALS, something would show up.
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Postby puggriffey on June 20th, 2004, 10:49 pm

absolutely, you would. give it time - the more you get comfortable you are OK, the more vcaluable your EMG will feel to you. With your symptoms and presentation, your doctor did more than enough to ensure you don't have this, and any asdditional testing, bulbar or otherwise was unnecessary.

JG
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Postby TheyDon'tBelieveMe on June 21st, 2004, 5:52 am

I specialize in bulbar ALS fears. You don't have it. Nothing you've said is consistent with bulbar ALS onset.
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Also....

Postby SLL on June 21st, 2004, 9:04 am

did you or do you have a feeling of mucous back in the throat that is irritating...I relaize it could just be post nasal drip, but it seems like my troat is not clearing it. I do feel plegm in the back of my nose as well.
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oh and one more...

Postby SLL on June 21st, 2004, 10:23 am

I have read about nasal speech...i do not think I have it, but how common is that initially as a symptom of bulbar als...of course i read about a 60 year old canadian man who this was his only symptom for about 4 months. ENT said he was fine in terms of ENT stuff and directed him to a neuro who checked him out and thought mysenthia gravos...later on it became als after he started having real choking issues...but the way he described it, took him 5-6 months to "get bad" Geez, I HATE this whole thing
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Postby maudlin on June 21st, 2004, 1:44 pm

There are many, many reasons for anyone to have nasal speech at any time of the year. For example, it's summer and high allergy season right now.

I'm familiar with Jerry G's story. He was nasal for a while, but fairly rapidly progressed to periodic choking and difficulty swallowing. The neuro he saw first suggested myasthenia gravis as a diagnosis, but it was checked as soon as possible with a simple test, the test disproved MG IMMEDIATELY, and the neurologist IMMEDIATELY suspected something neuromuscular.

His twitching followed the typical ALS pattern of starting in one area -- his arms -- and slowly spreading. His first EMG was highly suspicious, with the neuro bluntly mentioning ALS as a possibility right away, and the delay in his diagnosis was due to his doctors making an all out effort to find another diagnosis. So Jerry had a lot of very typical ALS signs within a few months of onset.

The odds of someone having typical BFS symptoms -- twitching in various areas -- AND also developing ALS simultaneously, are ridiculously, astronomically high. (Remember the long-term study showing NO BFS patients developing ALS, and the conclusion that BFS people are at risk for ALS as much as the general population -- that is, our risk levels are very low?)

Nasality in a BFS patient is much more likely to be due to a mild cold, allergies, sinus infections, adenoids, or just about anything else. ALS, as for the general population, remains a very remote possibility.
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Thanks Maudin

Postby SLL on June 21st, 2004, 2:58 pm

That was the man I referred to. Felt so badly for him, and when I read his story, apparently in his own words, he did make it sound much like it took a longer time to get bad, his initial neuro was not helpful scheduling a MRI for 2 months (!) down the road, etc.... and that his symptoms waxed and waned and did not get bad for some time...so thank you for clearing that up a bit. You are right, I do remeber him saying the twitching came later, and he did not even notice it, the DR did. Ironically his first twitching was in the arms and not the bulbar muscles, his site of onset.

I guess I am learning, little by little, that EMGs and neuros know what they are doing! and that something sinister would be evident, maybe not a clear cut ALS diagnosis, but something that concersn them would be noticed from the very beginning.
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Thanks Maudin

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