View Full Version : Bulbar ALS fear
So I'm not new here but haven't visited in a couple years. I couldn't remember my old username or info, unfortunately. But this place has brought me much perspective and peace during rough times with HA in the past, hoping for that right now again. In fact, I've had this exact fear before, about 4 years ago and this forum really helped me.
Ok so my current debilitating fear is bulbar onset ALS. And yes I've made the mistake many times of reading over at the ALS forums, making everything worse of course.
So my current fear started with incessant phlegm and throat clearing about 5-6 weeks ago. Then a couple weeks after that started I noticed excess saliva (but yet my mouth feels dry at the same time). I now have started biting my inside left cheek (not habitual) when I talk and sometimes when I'm eating. I also feel like my speech is weird but everyone around me says it's normal. I feel like I'm choking on my own saliva, mostly at night when I'm in bed consumed with fear and incessant thoughts. I'm driving my poor husband crazy and I just want to enjoy the time I spend with my kids and husband. I can't get past the fear that this is bulbar onset als. Of course I read on the als forums where a guy said his started just like this, so I can't let go of that. 😕
I want to never worry about this dreadful, scary disease ever again and I don't know how to get past my fears. It's so hard to believe it's not real when my symptoms are so real.
nip it in the bud now, i would go to my dr. i let me fester for months before seeing the dr and am down the rabbit hole now trying to climb out.
nip it in the bud now, i would go to my dr. i let me fester for months before seeing the dr and am down the rabbit hole now trying to climb out.
A few weeks ago I went and said I was concerned about als Bc of my symptoms...he checked neurological related stuff and said I was totally fine, to stop worrying. But the only way to know if it's als is EMG. Neurologists don't just hand out EMGs looking for als unless they really suspect it.
Please read this... (http://www.nomorepanic.co.uk/showthread.php?t=196071)
Positive thoughts
Positive thoughts
I've read it many times and unfortunately it doesn't stop the overwhelming fear. I hope I can get over this soon and move on with life.
Then check out this (http://www.nomorepanic.co.uk/showthread.php?t=199888&highlight=mpeckich) thread...
A few weeks ago I went and said I was concerned about als Bc of my symptoms...he checked neurological related stuff and said I was totally fine, to stop worrying. But the only way to know if it's als is EMG. Neurologists don't just hand out EMGs looking for als unless they really suspect it.
If you went to a neurologist and told him/her your symptoms and that it was bothering you to the point of affecting your health . I am sure he will give you and emg.
Then check out this thread...
Thank you...that did help to some extent except that my speech isn't my biggest issue. And that I'm almost 38, not 20. 😕
I was hoping it would help you by showing you that so many people on here think they have ALS, and none of them ever do.
Those are the big fears of HA/OCD...ALS, rabies, schizophrenia... We've seen people lose their livelihoods to fears of these on here, even though the probability of getting them is extremely minuscule. They go through months of testing, exhausting every possibility, not believing tests and double-guessing their doctors, when in reality they should've skipped it all and gone to therapy.
Breezie, I'm being eaten alive by bulbar ALS fear too, so I know what you're going through. And I'm 49, and adopted, so I don't even know if there's a family history :(
I think I hAVE ALS TOO - I HAVE A TWITCHING EYE, HAVE NOW FOR 2 MONTHS. AND NOW I FEEL LIKE MY WEAK. I HATE ANXIETY.
Breezie, I'm being eaten alive by bulbar ALS fear too, so I know what you're going through. And I'm 49, and adopted, so I don't even know if there's a family history :(
It's the worst of all my HA fears. And I tend to be a disease jumper. I've feared most cancers, HIV (when it's not even possible), all autoimmune diseases, MS, and on and on and this particular version of ALS scares me more than all of those combined. And sadly I conquered this fear once and thought I was over it. Apparently not. 😕
What are your symptoms?
It started with a twitching/quivering tongue three months ago. I immediately thought "neurological", but it wasn't until I googled and saw those dreaded three letters come up that my HA really took off. Physiologically, I've since noted asymmetry in my tongue, deviation when I poke it out, an asymmetrical soft palate (my uvula deviates also).
I am having trouble pronouncing words clearly (at least it feels and sounds that way to me) and some difficulty swallowing. The latter two may be anxiety related, I guess. Thing is, if I hadn't noticed the tongue acrobatics that night in May, I probably would not have noticed any of the other stuff either ... My hypervigillance is off the charts!
---------- Post added at 21:14 ---------- Previous post was at 21:13 ----------
Oh, and I am constantly clearing my throat and my voice is hoarse in the mornings. Excess saliva off and on too.
It started with a twitching/quivering tongue three months ago. I immediately thought "neurological", but it wasn't until I googled and saw those dreaded three letters come up that my HA really took off. Physiologically, I've since noted asymmetry in my tongue, deviation when I poke it out, an asymmetrical soft palate (my uvula deviates also).
I am having trouble pronouncing words clearly (at least it feels and sounds that way to me) and some difficulty swallowing. The latter two may be anxiety related, I guess. Thing is, if I hadn't noticed the tongue acrobatics that night in May, I probably would not have noticed any of the other stuff either ... My hypervigillance is off the charts!
---------- Post added at 21:14 ---------- Previous post was at 21:13 ----------
Oh, and I am constantly clearing my throat and my voice is hoarse in the mornings. Excess saliva off and on too.
Ok it really makes me feel better to hear you say you have the phlegm and the excess saliva. Those are freaking me out the most...and Bc I can be logical about you, I know you don't have ALS. Is your pleghm and saliva daily?
The excess saliva isn't. Sometimes my mouth is dry. The throat-clearing seems to be most mornings, but it's not terribly bad. I wouldn't even have considered it a symptom had I not been reading that ALS site :/
The tongue twitching freaks me out. It's got to the point where I've kind of become phobic about mirrors. And I'm constantly hyperaware of my voice, which is just makes me stumble and mispronounce even more. Ditto the swallowing. It's exhausting.
I go back and forth between being utterly convinced it's bulbar onset and then going, nah, I'm misreading normal bodily background noise and benign physiological stuff
Yeah...my phlegm is daily and my excess saliva is really when I focus on it. My husband swears it's normal amount of saliva and I'm just hyper focused on it. But regardless it drives me nuts. And at the same time, yep...my mouth feels dry. I wake up sooooo thirsty and my throat is full of phlegm. I do find when I'm busy and preoccupied, I don't notice much of these issues. The night time is the worst. I get consumed with thoughts.
And the last time I had these crazy fears my issue was the twitching. This time I don't have that. But I can tell you that passed when I stopped fixating on it.
If you're not having any speech or swallowing issues, perceived or otherwise, I wouldn't worry about the phlegm. That would be secondary to soft palate issues, I think. It's probably just post-nasal drip and your mouth is probably drying out from mouth breathing while you're asleep.
Nights are the worst for me too. Lots of time for my fear to fester, and I lose all perspective. I'm just trying to be patient, because the more time that passes, the less likely it is to be bulbar onset. From what I've read, it's not a subtle process and it progresses swiftly.
I feel like I notice I'm struggling to talk or get words out right but nobody else notices it. And I bite the inside of my cheek all the time, also an als issue.
Oh yeah. Last week, I was biting my cheek, tongue and lower lip so frequently, I ended up with a mouth full of canker sores
---------- Post added at 07:39 ---------- Previous post was at 07:37 ----------
I feel like I have a laundry list of symptoms, but there's nothing that's objectively FAILED yet. Which is, after all, the hallmark of ALS. So I'm just working myself into a frenzy waiting for the other shoe to drop ...
Oh yeah. Last week, I was biting my cheek, tongue and lower lip so frequently, I ended up with a mouth full of canker sores
---------- Post added at 07:39 ---------- Previous post was at 07:37 ----------
I feel like I have a laundry list of symptoms, but there's nothing that's objectively FAILED yet. Which is, after all, the hallmark of ALS. So I'm just working myself into a frenzy waiting for the other shoe to drop ...
Yes my mouth is full of canker sores right now. And I was up half the night thinking about whether or not I had too much dang saliva. Sometimes I wish I was anyone but me! I've spent my e tire life anticipating my demise.
Oh dear, you sound just like me ... (yet I don't think YOU have bulbar onset)
Weird how that works
---------- Post added at 08:05 ---------- Previous post was at 08:02 ----------
What I think could be partially at play with my speech issues is that I'm Australian, and we Australians don't enunciate terribly well at times. We tend to run our words into one another and drop consonants and so on. I think maybe I'm playing really close attention and noticing that each and every time I do it. It's feasible ...
Speech and swallowing issues
Many visitors fear bulbar onset. Generally speaking the first symptom of bulbar is slurred speech because the tongue does not work correctly. Sore throat, scratchy voice, food getting stuck are not bulbar symptoms and should be addressed by your doctor as they may indicate another issue but are NOT ALS. Saliva issues occur late in bulbar disease and noting excess saliva is NOT a sign of bulbar onset. The slurred speech of bulbar onset is persistent not a one- time or rare occurrence and will be noticed by others. If you are not being asked " are you drunk?" it is a good sign!
Complaints of difficulty swallowing and or a lump/ something in the throat are very common among our DIHALS visitors. Please look up globus and learn that it is a very common complaint especially among the stressed
Special note of tongue twitches. First if you stick out your tongue it will twitch. Neurologists examine our tongues at rest if they are looking for tongue fasciculations and those fasciculations are persistent not an occasional twitch. If you have been trying to examine your tongue stop! There is also a commonly repeated belief that tongue twitches are never benign. This is NOT true- they usually are benign. The source of this information appears to be an out of context quote by an ALS specialist. He had said that tongue twitches were never benign in his experience. He has since clarified he was speaking of tongue twitching in a patient already diagnosed with ALS. In his clarification he added that in the general non- ALS patient tongue twitching was most likely benign.
Anxiety
Anxiety can be a real problem that can endanger your physical health. It is what leads many folks to this forum, but it is a self-fueling fire—the more anxious you become, the more twitches you will have, the more you obsess with perceived weakness in your arm or leg or hand, the more dents you will find… and the more you will become convinced you have atrophy. If you can’t stop using the internet to diagnose your problems, or if you cannot stay away from this forum, that should tell you something important about your mental health.
Positive thoughts
I've got both this site open and also the ALS one :/ (In an incognito window, because I've blocked the ALS site on my main Chrome browser)
I spoke to my aunt in Australia yesterday. We haven't spoken in ages, and she didn't ask if I'd been drinking, which is a good sign right?
I definitely don't disagree with what you're saying but at the same time, talking to someone or others with similar struggles can kinda make you laugh at the situation Bc you realize how silly you all sound at times. And by being here, I'm not reading over st the ALS forum. Plus I've used places like this (anxiety zone) in the past to help me through tough times and it helped for sure. Sorry if sharing here is annoying but I assume that is why the forum was created...to help people who are suffering. And if talking back and forth with another member keeps me from googling or reading on the als forum, it's a small win for now.
I don't disagree with you either. Knowing someone else feels the same way can be comforting. At the same time, continuing to discuss your perceived symptoms is just feeding the dragon.
Rather than discuss your symptoms, why not discuss what you can do to help each other alleviate the irrational fear? Reassure each other by pointing out why you DON'T have ALS! In doing so, you not only help yourself but offer suggestions to others suffering the same fears :)
Positive thoughts
(and that's really my point... discuss "Positive" things as opposed to the negative)
I don't disagree with you either. Knowing someone else feels the same way can be comforting. At the same time, continuing to discuss your perceived symptoms is just feeding the dragon.
Rather than discuss your symptoms, why not discuss what you can do to help each other alleviate the irrational fear? Reassure each other by pointing out why you DON'T have ALS! In doing so, you not only help yourself but offer suggestions to others suffering the same fears :)
Positive thoughts
(and that's really my point... discuss "Positive" things as opposed to the negative)
Thank you, I appreciate that! And I want to try more of that. 😊
---------- Post added at 08:35 ---------- Previous post was at 08:33 ----------
I've got both this site open and also the ALS one :/ (In an incognito window, because I've blocked the ALS site on my main Chrome browser)
I spoke to my aunt in Australia yesterday. We haven't spoken in ages, and she didn't ask if I'd been drinking, which is a good sign right?
Yes, I think that's an amazing sign! I definitely do not think you have bulbar ALS and I hope we can help each other get through this!
And sorry for all the duplicate and deleted posts. I'm on my phone and I think Bc I have multiple windows open, it's all wacky! Now I think I deleted relating posts! 😂
---------- Post added at 08:42 ---------- Previous post was at 08:35 ----------
I don't disagree with you either. Knowing someone else feels the same way can be comforting. At the same time, continuing to discuss your perceived symptoms is just feeding the dragon.
Rather than discuss your symptoms, why not discuss what you can do to help each other alleviate the irrational fear? Reassure each other by pointing out why you DON'T have ALS! In doing so, you not only help yourself but offer suggestions to others suffering the same fears :)
Positive thoughts
(and that's really my point... discuss "Positive" things as opposed to the negative)
Also one quick thing...one thing that keeps me worried is when people don't tell me they don't think I have it. So like the guy earlier who said I need an emg and should demand one...my automatic thought is "omg, he thinks I actually have als!" I'm definitely one of those people that needs to hear that I sound ridiculous and that I don't have this and need to move on with my life (rather than spend my life doctor hunting and testing). When it seems like others might think "wow sounds like she has all the symptoms and just maybe this time it's real", it freaks me out and keeps the cycle going. So yes, I usually come here as a final resort to have people in similar situations tell me to snap out of it.
Also one quick thing...one thing that keeps me worried is when people don't tell me they don't think I have it. So like the guy earlier who said I need an emg and should demand one...my automatic thought is "omg, he thinks I actually have als!" I'm definitely one of those people that needs to hear that I sound ridiculous and that I don't have this and need to move on with my life (rather than spend my life doctor hunting and testing). When it seems like others might think "wow sounds like she has all the symptoms and just maybe this time it's real", it freaks me out and keeps the cycle going. So yes, I usually come here as a final resort to have people in similar situations tell me to snap out of it.
One of the things I've learned about anxiety and HA in particular is that it will grab onto anything that will validate the irrationality. So that statement from a member projecting his fears triggers you.
It's a no win situation when you think about it. Reassurance doesn't quell the fear and suggesting a test or going to the doctor just ramps up your anxiety. How many times have you read a post where someone goes to the doctor freaking out about (insert fear here) and the doctor finds nothing of concern but orders a test (CYA medicine - cover your arse) and then they go into melt down mode?
Positive thoughts
I'm loathe to even open the medical investigation can of worms. I know I won't take a GP's word for it. Which will mean a referral and a clinical exam. Which will then mean an EMG ...
Breezie, you might want to google sensorimotor OCD, if you're not already familiar with it. It's hyperawareness of involuntary bodily processes, such as swallowing and salivation.
In fact, I first noticed my tongue spasm when I became hugely focused one night on how my tongue felt weird in my mouth, like it was too big or something (there's actually a great Peanuts cartoon about this but I don't know how to embed an image. I wish I were as bad at googling disease symptoms). Anyhow, I couldn't stop thinking about it sitting there in my mouth, so I got up, looked in the mirror, and BAM, here I am three months later, obsessed with every word I utter and every swallow I take.
Yes Melfish! I have the tongue too big for my mouth sensation too! I'll look into that!
One of the things I've learned about anxiety and HA in particular is that it will grab onto anything that will validate the irrationality. So that statement from a member projecting his fears triggers you.
It's a no win situation when you think about it. Reassurance doesn't quell the fear and suggesting a test or going to the doctor just ramps up your anxiety. How many times have you read a post where someone goes to the doctor freaking out about (insert fear here) and the doctor finds nothing of concern but orders a test (CYA medicine - cover your arse) and then they go into melt down mode?
Positive thoughts
I have seen this ^^^ on here and AZ too many times to count!
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