Concerns about Bulbar ALS Symptoms

[FrogDrops8]

Well as some of you may know I've been twitching for a long time. I'm now focused on something scarier to me. Bulbar onset of ALS. In the past month or two I've noticed some tightness in my cheek along with some numbness and tingling. I've had a problem swallowing for well over year. I hope that my current swallowing problems are not some how related to my new bulbar symptoms. I have notice a dent in my cheek on the same side that I have never seen before and now that I have seen it I cant miss it everytime I look in the mirror. My upper lip twitches very badly when I hold my mouth in a certain positon. I've posted on before. My question about the tongue is this. I have not had any twitches in my tongue except for slight tremble when I stick it all the way out ( which I think is normal). For the past month or more I've been biting my tongue slightly when talking (a lot). Is this tongue weakness?? In addition my voice has been hoarse for a while now, I'm hoping this is caused by throat clearing,allergies or smoking but again this is new.

 

[MarioMasher]

I have never met a single person on this board who has had actual bulbar symptoms. And they have all had almost identical symptoms to yours. In fact if you go back and read the archives, you will see your post (and concerns) written over and over and over, almost word for word. Go back and dig through the bfsforum.com archives, and you will see how "bulbar fear" eventually turned out to be nothing in EVERYONE. Seriously, there have been 0 cases of actual bulbar. That will reassure you more than anything we could ever say. Seriously, I would predict that "Oh my God, I have bulbar symptoms!!!" has probably been the #1 most popular subject on this board over the past six years. Why? Why do people even read up on bulbar? No one ever actually gets it, yet everyone seems to freak out about it. My gut says that if someone actually DID have bulbar, they wouldn't even have time to stress over it on a message board. They would be laying in bed, unable to speak, eat, or breathe. Who thinks about panicking on a message board when you're having a hard time even drawing a breath?Tongue biting, tongue twitching, tongue spasms, facial dents, awkward breathing, closed airways, lumps in throat, excess mucus... these are all symptoms of lots of other things as well. Tons of people have had these symptoms. No one has ever turned out to have bulbar. I don't mean to be harsh about this, but you aren't the exception.The more you concentrate on biting your tongue, the more you will bite it. You just have to learn not to think about it. )

 

[FrogDrops8]

I dont think you being harsh, I've said those same things to myself. But as a suffer yourself (I'm sure you must be or else why are you here) you know how hard it is to get past the anxiety you have of ALS or whatever problem your having when you physcial symptoms are so real. Thank you for your response I really enjoy reading your posts and your are usually spot on. I hope you are this time as well.

 

[InkedMama]

Just wanted to weigh in I went through that and I posted about it...I was biting my tongue when speaking @ times but nothing else or more. I had swelling of the tongue due to dehydration in my pregnancy and I was missing a bottom molar which caused my tongue to fill in that gap naturally. I thought the same thing BULBAR als. Let me tell u, 11 months into this widespread twitching..if it were bulbar I'd be writing a bucket list or actually it would already be to late. Life expectancy with bulbar- 18 months..just think how quick that goes.Lovely

 

[MarioMasher]

Oh I absolutely understand it. Like I have said before, we have all been through the panic stage. My only advice to that is the same advice my wife gave me at the start of my own symptoms. She said to me, why don't you worry about the things you DO have, as opposed to the things that you one day MIGHT have? Because if you start thinking about all the bad things in life that could potentially happen to you, you'll never be able to make it through the day. I mean, seriously, go to an agoraphobia website some day, and read about the people who are scared to leave their house. That's what can happen to you if you continually dwell on things that could one day happen to you, but never actually have. You get lost in the panic cycle. It becomes a wasted life.Really, the more you learn about ALS (and I'm talking real, true info, not "I heard somewhere that you can have..." hearsay), the more you learn that it is nothing like what any of us have. It's not even close! Real people with real ALS don't have time to sit around and worry about it on a message board. In fact the more a person comes in here panicking and scared about a zillion symptoms, the more I am sure that they don't have it. As one neuro on this board once said, "Any time a patient pulls out a list, I know we are looking at anxiety." One veteran poster at this site once told me that all of the info is out there if people really want to read it. It's all there, as to how none of us could possibly have ALS. But people will consistently come back with "what if" scenarios, almost as if they want to prove the info wrong. It's like there are 100,000 BFS sufferers out there, all bound and determined to come back with an "I told you so" story, because they all think they will be the first and only exception. It's one of the reasons I think so many veteran twitchers end up leaving the board. Not because they don't have compassion, but because there's only so many times you can read the exact same "I bit my tongue, do I have bulbar??" panic post before you see the futility in it.Again, this isn't mean to pick on you or anyone in particular, it's just something I have noticed from spending a lot of time on this board. I have great compassion for anyone caught in the early stages of the panic cycle with BFS. I have been there, and I understand how all consuming it can be. It's horrible. It's why I am more than willing to be anyone's shoulder to lean on if they need it. But to answer your original question, no you don't have bulbar. Nor has anyone on this site ever had bulbar. The faster you accept that, the faster you will stop paying attention to what is going on in your mouth.I'll just repeat the slogan that has pretty much become my mantra on this board. Anxiety ruins more lives than MS and ALS could ever hope to, combined!It's only hard to get past the panic stage if you allow it to be hard.