Jaw clicking, overweight, fasciculations and advise

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jethro

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Joined
Nov 2, 2017
Messages
457
Reason
PALS
Diagnosis
09/2017
Country
HR
State
Croatia
City
ZAGREB
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.
 
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
 
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..
 
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.
 
@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.
 
;) Kim, I use a 1:1 thc:cbd tincture that helps a lot, but I ran out a week ago and for financial reasons have not re-ordered yet. I didn't realize just how much it was helping until i ran out. It was helping cramps some, but where it was really helping was spasticity. I'm a mess now and keep having to take additional baclofen tabs (4 or 5 a day vs the 3 a day when I was using thc/cbd).

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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