View Full Version : Bulbar ALS fears returning...
Ok, so this isn’t my first time posting about this. In the summer of 2017 I felt like I was having trouble swallowing and a plethora of other bulbar ALS symptoms. Those never really progressed and I often struggle with the same symptoms, but they aren’t worse. Fast forward to about 3 months ago. My left eye starts twitching like crazy. I feel like it’s been prone to twitching for a long time when I squeeze it shut but this is almost constant. Certain things trigger it like yawning, blinking, etc. Now about a month ago the middle of my nose started twitching. If I scrunch up my nose/face, it twitches like crazy and my cheeks even twitch. I feel like I’m constantly congested from it too. I fear it’s musvle weakness.
I also noticed when I drink soda out of a can, my jaw and lips shake/tremor. They don’t do that if I’m not doing that action. It freaks me out. I can drink from a straw just fine.
Anyway...I’m back to worrying over bulbar ALS, possible MS or even hemifacial spasm. I’ve never been prone to twitching earlier in life (39 now). So this is all weird and feels progressive. Would bulbar ALS already be very obvious since my fears started summer of 2017 and we are almost in 2019?
utrocket09
03-12-18, 21:07
Ok, so this isn’t my first time posting about this. In the summer of 2017 I felt like I was having trouble swallowing and a plethora of other bulbar ALS symptoms. Those never really progressed and I often struggle with the same symptoms, but they aren’t worse. Fast forward to about 3 months ago. My left eye starts twitching like crazy. I feel like it’s been prone to twitching for a long time when I squeeze it shut but this is almost constant. Certain things trigger it like yawning, blinking, etc. Now about a month ago the middle of my nose started twitching. If I scrunch up my nose/face, it twitches like crazy and my cheeks even twitch. I feel like I’m constantly congested from it too. I fear it’s musvle weakness.
I also noticed when I drink soda out of a can, my jaw and lips shake/tremor. They don’t do that if I’m not doing that action. It freaks me out. I can drink from a straw just fine.
Anyway...I’m back to worrying over bulbar ALS, possible MS or even hemifacial spasm. I’ve never been prone to twitching earlier in life (39 now). So this is all weird and feels progressive. Would bulbar ALS already be very obvious since my fears started summer of 2017 and we are almost in 2019?
Twitching is not an ALS symptom. If you had it you would have been worse by now.
If what you were worrying about in 2017 was, in fact, bulbar onset ALS, do you think you would still be uncertain about it now? I don’t believe you haven’t googled about the rate at which this disease progresses..... so.....? What do you think?
Also, and I may not be right about this, I think eye twitching (which is beyond common) is not a symptom of it anyway...
If what you were worrying about in 2017 was, in fact, bulbar onset ALS, do you think you would still be uncertain about it now? I don’t believe you haven’t googled about the rate at which this disease progresses..... so.....? What do you think?
Also, and I may not be right about this, I think eye twitching (which is beyond common) is not a symptom of it anyway...
If it were just the eye twitch, I wouldn’t be that concerned. Which is why I’d mentioned that it had been prone to twitching for a while (without my concern), but the frequency and combination with my nose and tremoring is what brought on concern.
And yes, it actually is a symptom. Although not just that alone. Twitching is usually due to weakness and it’s hard to test your nose or eye for weakness, unlike your hand for example. I do know people on the ALS forums (which I have not visited since 2017 on purpose), have said they had twitching for long periods of time before bigger symptoms came on.
Regardless, my brain is getting the best of my anxiety today and just had to get it out there instead of letting it fester internally. Thanks for the reply.
Would bulbar ALS already be very obvious since my fears started summer of 2017 and we are almost in 2019?
Yes. My neighbor across the street was diagnosed in the spring, died in September of the same year. His symptoms were not anything you described.
I'm sorry you're worrying about this and experiencing symptoms but there's nothing in your post that indicates ALS. Nothing.... :shrug: Anxiety on the other hand is progressing and making your life miserable :weep:
Have you or are you doing anything to treat it?
Positive thoughts
I'm sorry you're worrying about this and experiencing symptoms but there's nothing in your post that indicates ALS. Nothing.... :shrug: Anxiety on the other hand is progressing and making your life miserable :weep:
Have you or are you doing anything to treat it?
Positive thoughts
Thankfully my life is not miserable at all. Sure I have fears and worries, like most people here or you wouldn’t be here. However, I have tons to be thankful for and live my life to the fullest each day. No I’m not medicated. Been there, done that. My anxiety comes in waves and is not constant. I go 90% of my day focused on my kids and our everyday activities. But yes, I’m not perfect and at times my fears get the best of me.
---------- Post added at 10:11 ---------- Previous post was at 10:10 ----------
Yes. My neighbor across the street was diagnosed in the spring, died in September of the same year. His symptoms were not anything you described.
Thank you...and I’m sorry to hear about your neighbor. 😕
Kingdawson
04-12-18, 19:56
If it were just the eye twitch, I wouldn’t be that concerned. Which is why I’d mentioned that it had been prone to twitching for a while (without my concern), but the frequency and combination with my nose and tremoring is what brought on concern.
And yes, it actually is a symptom. Although not just that alone. Twitching is usually due to weakness and it’s hard to test your nose or eye for weakness, unlike your hand for example. I do know people on the ALS forums (which I have not visited since 2017 on purpose), have said they had twitching for long periods of time before bigger symptoms came on.
Regardless, my brain is getting the best of my anxiety today and just had to get it out there instead of letting it fester internally. Thanks for the reply.
No actually you are wrong. Eye twitching is NOT a symptom of ALS. The eyes is the one place where that appalling disease takes mercy on.
And also I think the record when twitching predeceased weakness was 8 months but how do you know this person wasn't simply suffering from BFS and then unfortunately developed ALS. Maybe it wasn't related?
Thankfully my life is not miserable at all. Sure I have fears and worries, like most people here or you wouldn’t be here. However, I have tons to be thankful for and live my life to the fullest each day. No I’m not medicated. Been there, done that. My anxiety comes in waves and is not constant. I go 90% of my day focused on my kids and our everyday activities. But yes, I’m not perfect and at times my fears get the best of me.
Then you can put away that 10% blip and move on as this is not even remotely (and I mean no chance whatsoever) related to ALS! :D
Positive thoughts
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