Bulbar ALS or BFS

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Bulbar ALS or BFS

Postby Guest on November 21st, 2002, 5:13 pm

Okay first let me start off with I am 24 year old female I first started out twitching about 2 months ago. It was in my left leg, and I looked it up on the internet and ALS popped up. Since than I can not get it out of my head. I went to my doctor and was told that it was definently not ALS, and she ran the whole blood panel and all. Anyway, I went home and was reading on the internet and found something on Bulbar ALS, and I can actually remember thinking... Well thank goodness I don't have those symptoms. Fast forward 3 weeks latter and I began having a difficult time swallowing. I feel like I have to swallow two sometimes three times to get the food to all go down. I am not choking, but it feel as though there is stuff stuck in my throat. Also I have a sensation that I am constantly drooling, though when I go to wipe my mouth it is totally dry. I am fasiculating all over, some rather strong that make my upper body jerk, and some not so strong... the funny thing is that my tongue is not fasiculating, as far as I can tell. I feel like my voice is going to go at any time, but no one seems to notice. My husband and parents say I sound like I always do, no hoarseness and no slurring. I do have a sore throat. I tried to go to a neurologist, but he works in a practice with a GP and to see the neurologist you have to be referred by the GP. I went and he said that he had seen a few people with ALS before and he could tell from across the room that I did not have it. He watched me walk, looked at my throat, tested my knee reflexes (normal), and said that if anything was wrong it was not ALS and he was sure enough to make me a promise, but how can he know? You cant observe someones swallowing ability, and he didn't test anything. I have thought to go to another neurologist but the closest is 70 miles away, and my husband would have to take off work, which at present is not possible. What do you guys think? Is it just anxiety? Is it Bulbar ALS? I feel a tightness in my throat as though it is constricting. I have calculated the odds and I realize that according to percentages that only about 40 people at my age, sex and type actually are diagnosed with Bulabar ALS, and I try to tell myself out of 280,000,000 it is not likely, but if you are one of those 40... your odds are 100%. I can push out the sides of my cheeks with my tongue, and do all of the talking tests(ta, pa, ka, la, etc.) I fear that any day now I am going to wake up and not beable to talk, or swallow, or breath. PLEASE HELP. I am very scared. Also would Bulbar ALS present with all over body fasiculations?
Mary :cry:
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Relax

Postby Souris on November 21st, 2002, 6:05 pm

Hi Mary,
I know what you're going through, I'm having exactly the same problems: I started twitching about 5 months ago, read about ALS and now I observe my body very closely for possible weakness. I was convinced I had weakness in my arms, but it went away again. Then it was my leg, but again, the feeling didn't last for long. Now I'm having the constricted feeling in my throat as well, and my tongue twitches from time to time, so I'm very worried. I convinced myself that I had speech problems, but like you, everybody tells me it's not true. I also noticed that I'm talking perfectly normal and don't have the weird feeling in my throat when I'm not thinking about it (doesn't happen very often). I have days when I can hardly feel it, and then again, especially in the evenings, I have the feeling that something's wrong. I'm having a sore throat right now with a kind of tonsil infection, so I guess that's why swallowing is feeling strange sometimes.
Also, a lump in the throat is a common symptom of anxiety!
Lots of people here have tried to help me relax and I'm very thankful for that.
I guess, like you do, that bulbar ALS wouldn't present with widespread twitches over several months. I have had episodes of hypochondria before and I hope it's just my scared mind again playing tricks on me.
I'm going back to my neuro (who already told me once not to worry) in a week. If you're really scared, try to get a neuro appointment for your peace of mind. But I think you can believe your GP also, he sounds very convincing to me.
Try to relax a little bit.
Post another message for me here, if you have further questions, I visit this forum every other day (it's reassuring).
Take care.
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been there Mary

Postby jblack on November 21st, 2002, 6:35 pm

Happened to me about a week after discovering Bulbar-onset on the web. Up until then hadn't even thought of my throat, except for a few tongue twitches! (they're actually pretty active today).

You DON'T have ALS. Really, you don't. One of the best things I read was from a doctor talking about Bulbar-onset: he replied to someone that it's not a "sensory" feeling. People with Bulbar-onset ALS don't get a funny feeling in their throat, and they don't "feel" as if they can't swallow, they actually can't. ALS is not sensory. The fact that you can feel that lump in your throat is actually encouraging!

But, amazing as anxiety is, just typing this message I got the feeling in my throat! We all have anxiety disorders, Mary. Me too. It's good to come here and talk about it, it makes me feel better. I hope it helps you. You DON'T have ALS!

jesse.
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Postby Asterix on November 22nd, 2002, 8:00 pm

Mary,

relax.. what you describe does certainly not sound like bulbar ALS.
Instead it sounds like typical anxiety/hypervigilant related problems.
If you browse through the archives of the MGH neuro forum you can
see that dozens of people have the exact same "bulbar" symptoms and none of them has ALS.
The key is to try to only consider real clinical /physical and persistent symptoms, like for example objective/noticeable loss of tongue strength or the real and persistent inability to articulate certain words, clearly visible atrophy or continous choking on thin liquids.
Whereas all the following signs ar *NOT* indicative of ALS but of anxiety/stress/hyperawareness: waxing and waning of sx.; percieved
voice changes, "feeling" of difficult swallowing.
Another point is the excess saliva isssue: In ALS, the reason for
excess saliva is the definite inability to swallow the saliva: so as long as you are able to swallow at all the excess saliva has nothing to do with ALS.

Yes I know how scary this bulbar stuff can be (I too am having episodes
of bulbar anxiety .... just trying hard not to focus on this perceived sx.

Your EMG will be clean and with time passing the fear also will
eventually go away :)

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Postby Guest on November 22nd, 2002, 10:33 pm

Thank all of you for your replies! It helps to know that others have similar symptoms. It really is scary! I have truly got to quit going to the ALS web sites! I swear they are going to give me a heart attack! I try so hard to keep telling myself nothing is wrong, but sometimes "myself" refuses to listen :) ! I have a sore throat as I mentioned above and it is making me hoarse at night, not a good thing for someone who fears bulbar symptoms. But if it goes away that is a good sign right? Because in the mornings it is barely noticeable. AAH! Thanks again guys for your input, it really helps.
Mary
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Postby Nole on November 23rd, 2002, 11:30 am

I am around your age as well and the best advice I can give you is stay off of those horrible sites. You need to get your anxiety under control. The mind is a powerful thing and you can make yourself have symptoms that are not even there. Find something you enjoy, and try relaxing techniques (yoga, massage, breathing, work well for me). With time the symptoms will get better. I started 6 months ago and the symptoms were horrible but then I woke myself up and said you are fine, go on and do what you enjoy. And now I barely twitch, somedays I dont. It is a mind, body connection, read some inspirational books, focuse your worries on positive things and I am sure with time you will start to feel better. We are here when you need us.
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Anxiety

Postby Souris on November 23rd, 2002, 1:06 pm

Hi everybody,

I agree perfectly on the anxiety issue. It's incredible what we put ourselves through. I have been through bulbar fears a lot recently and it's really tiring. For the last six months, I've been almost constantly worrying about my health.
I have a neuro appointment on Monday and if that's reassuring (it certainly will be), I have decided to search psychological help on my anxiety problems. I guess I can't cope with this on my own and I have to get back to normal life again!
I'll keep you posted.

Ah, by the way, I asked two perfectly healthy friends of mine today if they also have the tooth marks on their tongues, and they have them, exactly like mine! What happens is that with our anxiety, we're becoming aware of things in our bodies that have always been there and are very normal, but we just didn't notice them before. This can go on forever if we let it happen. I have decided to try to break the vicious circle of anxiety and perceived symptoms, I really hope it'll work...

Take care.

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Postby Greg on November 23rd, 2002, 2:26 pm

I don't believe the throat symptoms are caused by anxiety. We need to be aware that our culture right now is heavily influenced by this "you have stress, now buy our drug" mentality. I think the nerves and muscles aren't coordinating properly due to whatever this bfs is, and muscles are acquiring uncomfortable tension. I have had plenty of stress before I got this bfs, but I never had muscles twitches from it nor did I ever have the bothersome throat symptoms. I get painful tension in back of neck, globus, a tension similar to if squeezing hands around neck, a hyper sensitive gag reflex, and neck fatigue. When these symptoms really get going, they're always accompanied by increased neck twitches. Occassionally, some muscle group in the neck will relax or normalize all of a sudden--its all just this bfs causing nerves and muscles to not work quite right. By the way, I'm long past stressing over ALS, and I just don't see that these symptoms are connected with stress, although I suspect if one is stressed, the muscles involved will tend to stay tense rather than relaxing properly once you've calmed down. Its no different than these people who have it in arms and legs saying exercise makes them feel oddly. I've also had similar strange tensions in arms and legs. Anyway, I've been able to give myself a LOT of relief from the pain of these neck problems with a hot water bottle. Try sitting down with it while you watch a movie for a couple hours before bed, using it on front, back, and sides of neck, as hot as you can stand it. I think it is the equivalent of "manually" relaxing the muscles, since the nerves don't seem to be doing the job. Get all those muscles heated up till they're loose as putty. I had horrible neck problems for a couple weeks when I first tried it, and it took three evenings with hot water bottle to get feeling real good, since then I've just never allowed it to get bad without applying the bottle, which hasn't failed me yet. Good luck, sorry for the long posting.
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anxiety

Postby jblack on November 23rd, 2002, 2:38 pm

Sounds like yours might not be affected by Anxiety, Greg. But I know the throat symptoms *can* be brought on by anxiety -- I did it to myself about 2 weeks ago, I was getting really worked up about ALS and suddenly there's a big lump in my throat, my swallowing feels weird ... and I'm calling my doctor. Of course, when I woke up the next morning I was fine, and I realized what I was doing to myself.

BFS symptoms are definitely "real" and "physical", but anxiety disorders can cause real physical symptoms too. Anxiety sets the nervous system on edge, it would be surprising if it didn't produce twitching and constriction. It's always going to be difficult to tell where the line is, and I actually don't think it matters much. Anyone who feels they need to treat their anxiety should definitely do so (though I agree pills aren't always the answer, they're not for me), and anyone who can find other relief for the physical symptoms (something I have been unable to do) should definitely do that -- and be thankful!

jesse.
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Postby Arron on November 24th, 2002, 1:11 am

Ever have a true anxiety attack where your heart races to well over 185 BPM while sitting down, you sweat like you just ran a 20 mile marathon through the Sahara Desert, your legs become soft rubber and you can't stand-up, your throat becomes so tight that you almost can't breathe, your stomach gets so upset that you get the sh#ts, you tremble, jerk, shake and jump at every slight sound or movement, you completely lose your appetite, you can't sleep if your life depended on it, your chest hurts and feels like your heart is going to explode out of it like that creature did in the movie "Alien", your arms and legs go numb, you can't talk and you start to choke every time you try to talk? Those are REAL symptoms caused by stress and anxiety. No disease, no underlying mystery illness like BFS or anything like that. These symptoms can be seen and monitored on an EKG, by reading your pulse, by checking your blood pressure, by having a brain wave scan and many other physical tests that show REAL symptoms and the minute you take an Ativan, Xanax or any other kind of fast acting Benzo, it all goes away. That is 100% anxiety and nothing more. Diseases and symptoms related to an underlying disease do not and can not react to simple Benzo meds, period.

Although I agree that too many strange symptoms are blown-off these days by doctors who label everything as stress or anxiety related, you have to understand that stress and anxiety DO cause real and serious symptoms and this is the very reason why so many strange symptoms get labeled in this category.

I and many other's have lived with severe anxiety for literally decades and they can be triggered by watching a scary movie, seeing something horrible such as a really bad car accident, drinking too much caffeine, not getting enough sleep, hearing a "bump in the night", listening to your own heart beat and so on. None of this is caused by any disease or mysterious illness. Anxiety attacks are caused by anxiety, which is exactly what people go through when they think they have a serious and deadly disease, such as ALS, and start getting strange symptoms, and to someone that has had LOTS of anxiety attacks, a lot of these strange BFS symptoms seem pretty typical. This goes for the swallowing problems and the lump in the throat thing everyone speaks of too. I mean, think about it... what do you do when you are scared? You swallow hard....GULP! It's even mimmicked in movies and cartoons where a character gets scared and swallows his Adams Apple with that tell tale "GULP" sound. You have to force down a swallow when you are unknowingly tense from anxiety and this is EXACTLY what most of you are going through while freaked-out over thinking you have ALS or some other really nasty disease.

Meds DO help and they are prescribed because they WORK. We should count our blessings that we live in an age that has meds available that are effective in relieving serious anxiety disorders. Maybe some people don't like taking meds and that's fine... it's your choice, but no one can say that all of these symptoms can't be caused by anxiety until they have lived through several MAJOR anxiety attacks themselves and have experienced first hand what your own body can (and will) do while under stress or being anxious. Don't be too quick to blow anxiety off. It will cause symptoms that you can't even imagine, and if you are one of the unfortunate one's that has experienced a severe anxiety attack, you'll know exactly what I'm talking about.
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PSYCHOS

Postby GUESTTT GUY on December 10th, 2002, 1:51 pm

PLEASE.. YOU PEOPLE NEED HELP...PURE IDIOTS FREAKING OUT OVER NOTHING, GROW UP AND ACT LIKE AN ADULT..WHAT A BUNCH OF ANXIETY LOSERS... GROWWWWWW UPPPPPPP. BYE
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Postby Guest on December 10th, 2002, 3:22 pm

Hey Guest...
FUC* OFF!
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Postby guestnole on December 10th, 2002, 5:50 pm

The last thing we need on this site is an a**hole like you guest guy :evil: . These is a support group for people with real worries and concerns and until you have had them I suggest you stay off of this site. As for the anxiety issue, I have suffered from what I would call minor anxiety from time to time (but who hasnt some time in there life) and have experienced some of the symptoms that Aaron has spoken of (this happend around when my grandmother died and was dealing with death for the first time in my life). This I believe makes you a stronger person, figue out what is bothring you and learn to deal with it. I have been twitching for 6 months now and yes life is stressful, but I dont think stress/anxiety is the cause of my twitches. I have lived my life this way for many years with no twitches, I can worry about things, but who doesn't from time to time. I am a strong person and I can get things under control if I feel things are getting to stressful and my body is telling me something. We do live in a world where the word ANXIETY and STRESS are heard everyday whether it be on tv, from friends, or doctors. I do think it is a real problem, but I also think everyone should take a step back and realize that life is stressful and things do happen and somethings are uncontrollable. Dont waste your time worrying about trivial things, life will pass you by. As for this BFS stuff, I dont know why this has happend to us, I dont know why we twitch, I have some thoughts of what might have caused it but they are just thoughts and ideas. All I know is that it is benign and I am getting better. I dont think it is caused by stress or anxiety, although it can intensify them and it defiently can cause stress and anxiety. Find away to help yourself, believe in yourselves, and remember the mind is a powerful thing, use it wisely and positively and I think we all will be better off in life.

NOLE :lol:
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Postby evans on December 20th, 2002, 5:20 pm

I'm a new member to this site and it is great to read other peoples stories who are similar to my own. I have not had an anxiety problem and i have fasics. The scare is real because als is not something you can diagnose on a ct scan or a biopsy, it takes an average of 1 year to diagnose. All of us twitchers know that als is never 100% ruled out. We have to live our lives to the fullest and take life as it comes. Boy would i love having a medical scare that only needed a ct scan to rule in or out. Just my thoughts on the subject and i have also had bulbar als worries.
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Postby Arron on December 23rd, 2002, 8:51 pm

Don't pay any attention to that idiot "Guesttt Guy".. there's an ass hole in every bunch and he has just proven that he is it.

It's always some weenie little coward that comes-in, says something stupid to show just how low on the food chain they really are and then they leave. No balls at all....

His sister / girlfriend must be out getting some more smokes and some Coors Light while their 1977 single wide trailer is being repo'd, or maybe Nascar isn't on TV right now or something and he needed something to do other than look in the mirror at his Mullet hairdo. Either way, the best thing to do is just ignore a candy ass like that, because they shure as hell don't have the balls to say anything like that in person or they'd be spittin' out teeth. It's easy to hide behind a computer... Maybe if he had a job, he wouldn't have time to be on here acting like shuch an ass... Just laugh it off as a mid western, minimum wage earning (if he even has a job), trailer trash moron... 'cause that's all he is...
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