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Member Join Date: 2017 City: ZAGREB State: Croatia Country: HR Diagnosed: 09/2017 Interest: I have been diagnosed with ALS. |
app. month ago or so my (right side) jaw started clicking when i open my mouth widely, but not when i chew. i have no problems with chewing or swalowing and i have powerfull bite. just like kind of joint appeadred suddenly. is it als connected, or...? this has been discussed many times, i know, but can not find particular answer. i'm 6,03 ft tall/225 pnds. obessed. same mass like year before, but composition is different. more fat, less muscles. very hard to wear that mass. i know that optimal bmi for maintainingis app 30 which i have now, but i can not move cause of weight and i dont stop gaining it. losing weight goes with als progression (cause bulbar als is comming, drastical loss of muscle mass, or...?), but i really have to lose at least 20 pounds intentionally, targeting low carbs, but instead of carbs mct oil. will it significantly worsen my health/progress als? i have fasciculations for 3+ years. they are hardly visible, but they are ![]() i complain to neuro, and when i show it/look at them, they stop. frustrating. neuro is angry and says: "do you want me to show you what fasciculations are??" emng sees fasciculations which are (dont laugh, i count them!) 200-600/min. do fasc. stop at some als phase? i suppose that pals with significantlly loss of muscles dont have fasc. cause theres nothing to fasciculate. | ||
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New Member Join Date: 2018 City: Matlock State: Derbyshire Country: Uni Diagnosed: 06/2018 Interest: I have been diagnosed with ALS. |
Hi jethro. I have a sore right side of Jaw when I yawn and it is only sore then. I presume it is some loss of muscle strength. I have a few bulbar symptoms like nasal weakness and I sort of gargle on occasions. I am also 20+ pounds overweight since this hit me in November of 2017, I try to Intermittent sort of fast by eating one main meal in the afternoon even though not much appetite really, but I have not lost any excess. All medical information says keep it all on while you can. I like you feel uncomfortable with carrying extra on my weakening wobbly Legs. What a trial we all have. I wish you well friend and hope for a miracle for us all.. Peace.. TIANDB
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Senior Member Join Date: 2017 City: Grafton State: MA Country: US Diagnosed: 03/2017 Interest: I have been diagnosed with ALS. |
My jaw makes a kind of cracking sound and almost feels it is coming unhinged when I yawn. It's hard to describe, im not sure if that's what you're referring to. As an aside, yawning in general is a nightmare for me, it also comes with blindingly painful tongue cramps, as well as tongue spasticity where the root of my tongue goes rigid and I can barely swallow saliva or breathe around it until it softens- I'd like to make a really inappropriate reference here about having something hard down your throat ehem..
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Extremely Helpful Member ![]() Join Date: 2014 City: The Beach State: South Country: US Diagnosed: 08/2015 Interest: I have been diagnosed with ALS. |
Kristina, Your post made me cry and laugh at the same time. How many milligrams of CBD oil are you taking. I think that and magnesium helps my cramps a bunch. | |||
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Member Join Date: 2017 City: ZAGREB State: Croatia Country: HR Diagnosed: 09/2017 Interest: I have been diagnosed with ALS. |
@kristina do you have tongue fasciculationa? how about speech? i think i'm unique: while i jawn, my right side is shaking just like i'm plugged in... not left, but right side. my neuro wrote once: light fasciculations with no clear sign of atrophy, few months later: no fasciculations with no clear signs of atrophy.
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Senior Member Join Date: 2017 City: Grafton State: MA Country: US Diagnosed: 03/2017 Interest: I have been diagnosed with ALS. | ![]() jethro, yes, I have tongue fasiculations. I am bulbar onset so there is a lot going on in my face, speech and swallow region | |||
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