Hi: I'm reaching out to the group because I wanted to see if I have true bulbar symptoms and how to proceed if I do. For the past 6 months, I have had a large amount of salivia. This especially occurs after I drink water (I have to spit almost immediately). I also wake up every morning with salivia in my mouth. Additionally, I have had instances of biting my tongue and cheeks. Also, I get a sore if I sit too long and my bones are constantly cracking. Initially, I did have very sore legs and arms, but that went away after the first month. I did go to a neuro back in September, and he did not seem worried about als. The only thing that has me somewhat reassured is that I have gained almost 30 pounds the past few months about it not being als (which isn't good either but I have been stress eating). Thoughts? Would weight gain be a good sign it's not bulbar als? Thanks!!!
Scared about bulbar symptoms
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soonerwife
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I didn't see anything that sounds like ALS.
ShiftKicker
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Hello-
When you're worried about having a particular disease it's really easy to subconsciously cherry pick symptoms to fit. When people come here to say they have twitching or they're biting their tongue, it's just like someone going to a lung cancer forum and saying they have a cough.
ALS has so many different symptoms and is diagnosed with some pretty rigorous clinical testing. Neurologists use pattern recognition via certain physical tests to assess whether they should pursue a particular line of exploration. Approach your GP, let them know your symptoms and allow them to refer you to the right specialist. It's possible a neurologist is not the right specialist for you.
I am not dismissing your symptoms here- just letting you know that in person consultation with a doctor is your best bet before you head straight into thinking you have a terminal disease.
When you're worried about having a particular disease it's really easy to subconsciously cherry pick symptoms to fit. When people come here to say they have twitching or they're biting their tongue, it's just like someone going to a lung cancer forum and saying they have a cough.
ALS has so many different symptoms and is diagnosed with some pretty rigorous clinical testing. Neurologists use pattern recognition via certain physical tests to assess whether they should pursue a particular line of exploration. Approach your GP, let them know your symptoms and allow them to refer you to the right specialist. It's possible a neurologist is not the right specialist for you.
I am not dismissing your symptoms here- just letting you know that in person consultation with a doctor is your best bet before you head straight into thinking you have a terminal disease.
Nikki J
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The saliva problem in ALS relates to swallowing difficulty not excess production. You state you have gained about 30 pounds? I doubt you have swallowing difficulty.
Biting tongue or cheeks is not indicative either. The neuro said no. Check back with your pcp but don't worry about ALS
Biting tongue or cheeks is not indicative either. The neuro said no. Check back with your pcp but don't worry about ALS
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Thank you both for your input. My thought was that since bulbar generally effects mostly swallowing liquids instead of foods that I could still gain weight. I will try to figure things out with my doctor.
Last question and then I will let this lie. I do appreciate the feedback. After I drink water, I generally find myself clearing my throat. I then spit out salivia. Is this indicative of a swallowing problem or would it be more in tbe form of choking? Thanks again!
ShiftKicker
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Please ask your doctor. Again, it's like saying you have a cough and going straight to worrying about lung cancer.
Atsugi
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"It's hard to trust doctors."
So you trust strangers on the Internet?
""it just seems like what I've read here seems to indicate it is, esp the throat clearing"
I suspect there are some nuances you missed.
ZBD, I've read your posts and you didn't post anything to make me think you might have ALS.
More questions and more symptoms won't change that. See your GP medical doctor.
So you trust strangers on the Internet?
""it just seems like what I've read here seems to indicate it is, esp the throat clearing"
I suspect there are some nuances you missed.
ZBD, I've read your posts and you didn't post anything to make me think you might have ALS.
More questions and more symptoms won't change that. See your GP medical doctor.
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