Increase of twitching

[scootermax]

i do not know how to delete the above post
i forgot to add

that my tongue has been twitching (well it has hard to keep it still when i look at it in the mirror) i used to be able too

now this could be stress i definantly hope
since i had been sleeping poorly in the last 2-3 weeks because i spent so much time at the hospital with my mom being on IV trying to convince her to get an PEG already to leave and be happier

 

[BethU]

Re: Twitching/Fasiculations in ALS!

Lorie ... How are things going? Have you had your appointment yet with the specialist? Has s/he given you a diagnosed?

Keeping you in my thoughts.

 

[rocmg]

scootermax -- i'm so sorry you are suffering so much anguish. if you could convince your mum how easy it is to have a the PEG operation and then go home and try to live as normally as possible... i really hope you can. i'm sorry ALS is in your family and you have these fears. it's unlikely to be your environment if the ALS gene(s) are hereditary.

i really have to weigh in on the whole "twitching" thing that some others talked about earlier in the thread... while widespread twitching may not be an early symptom of ALS, localized twitching that quickly spreads to other limbs is definitely an indicator of where ALS is heading next -- in my mum's case at least.

the first twitches were noticed in her right arm, a little after she had complained of weakness in that arm... they then moved to her left arm, which she says has now weakened... she also has twitches in her neck, trunk and recently her right leg. to my mind, it's almost like a precursor of what is to come.

however, just because you twitch does not mean you have ALS, but if you do have ALS and are a "twitcher" i would definitely be paying attention to what's twitching and what's not.

 

[RoadKill]

rocmg describes my experience perfectly. (I love your sig line.) Twitches, followed by weakness. Now when I get new twitches, I know it's a sign of what is to weaken next and atrophy next.

 

[joelc]

rocmg describes my experience perfectly. (I love your sig line.) Twitches, followed by weakness. Now when I get new twitches, I know it's a sign of what is to weaken next and atrophy next.

Not necessarily true! Everyone has twitches and they don't turn into weakness or atrophy. Twitches do not automatically mean this or signify ALS.
Has no one been listening?

 

[halfin]

I had twitches start about the same time as my other symptoms. I have a note in my exercise log May 4, that the day before after a long run I found all my muscles were twitching and wouldn't stop, even my arm muscles. I first noticed some speech slowness and slurring about a week before. A week or two later I noticed my hands felt a little weak mostly when writing or signing. Since then my whole body has continued to twitch continuously, arms, hands, legs and trunk, each one many per second. But it hasn't led to weakness anywhere but my hand and mouth where I first noticed it. I have gotten a little worse in those two places but not change anywhere else. So unless my whole body shuts down pretty soon, the rule about twitches preceding or predicting weakness certainly hasn't applied in my case. This stuff is different for everyone.

 

[RoadKill]

I said it was "my experience."

 

[GlenBrittle]

Twitches are Twitches.

Itches are Itches.

Both are something we just put up with.


Did Joel say something ? :razz::razz:

 

[Zaphoon]

Twitches can be fun if you let them be. When I get bored, I just look at my legs and root those tiny twitches on!

I even try to see which leg is twitching more and that leg is deemed the twitching champ!

You can make up songs about your twitches and if you are not musically inclined, compose a sonnet.

You can even measure your twitches. (I have short ones and long ones!)

You can name them Petey, Fred and Ethel!

Best of all, you can stick those twitches with needles (like they do at the neuro office) when they get out of line! Great fun! (a #4 sewing needle will do just fine for this...)

Zaphoon

 

[MtPockets]

Have you taught your twitches to sew yet? :lol::lol:

 

[Al]

Yea, Glen and Zaph are a couple of sew and sews alright.

AL.

 

[GlenBrittle]

Best of all, you can stick those twitches with needles (like they do at the neuro office) when they get out of line! Great fun! (a #4 sewing needle will do just fine for this...)

Zaphoon

Its all fun and games until someone doesn't have Green Rubber for skin.

If you want to see the twitches you cant see , sit quietly in a tub of water and watch the waves. Ahhhh ... the lithium days.

Glen

 

[rocmg]

Twitches can be fun if you let them be. When I get bored, I just look at my legs and root those tiny twitches on!

I even try to see which leg is twitching more and that leg is deemed the twitching champ!

You can make up songs about your twitches and if you are not musically inclined, compose a sonnet.

You can even measure your twitches. (I have short ones and long ones!)

You can name them Petey, Fred and Ethel!

Best of all, you can stick those twitches with needles (like they do at the neuro office) when they get out of line! Great fun! (a #4 sewing needle will do just fine for this...)

Zaphoon

Zaphoon... I remember reading somewhere that you have PLS? But then, I read elsewhere that fasciculations are never a symptom of PLS? This makes the whole thing more confusing for me... or is it atrophy you don't get with PLS?

I beg to differ in the whole "twitches aren't important" debate... twitches have been quite significant in mum's ALS... I don't think it's purely coincidental.

 

[joelc]

Yes, twitches are a part of having ALS. They are not a means to diagnosis. They mean nothing of themselves. Just because someone has them does not mean they will have ALS. That is what is trying to be communicated.

 

[AndyDJX]

Twitches are always a touchy subject because they are clearly a part of ALS, but that fact has caused a countless amount of people to flip out thinking they have ALS when all they have is twitching. I've been twitching like crazy for almost 3 years and have atrophy in my hand. Still trying to figure out WTF is going on with me... my muscles fatigue easily but I don't have any severe or super obvious weakness... my EMG is "borderline normal" which means it's kinda/sorta but not completely clean... the good news is after 3 years I'm still totally functional. I actually went bowling last night and did very well! A little weakness afterwards, but nothing terrible.