ALS Fasic Pattern: Real or Myth?

[InkedMama]

Ok. I would like to ask a question that may arise and uproar....It the past few weeks, I have searched through TONS of neurology info, neuro return visits posted, from specialists and als specialists. My question is....It seems that a lot of als specialists and neuro's say that als fasics have a "Distinctive pattern". I know this is going to raise a lot of eyebrows..because of the term "a twitch is a twitch is a twitch". I believe maybe the idea that "onset widespread" is not a indication and widespread in general...the random popping corn I hear is usually always benign (the sporatic ones that hit random muscles groups within a few minutes, hours or etc.). I gathered this from medhelp and some other neurology forums and from this site as well.So when I read a twitch is a twitch is a twitch....It doesn't comfort me. (Weird huh). I've been at this almost 4 months this go around..and I hope I am out of the woods. No Weakness that I Can detect..etc. It also weirds me out that I dont have hotspots as the majority of you guys do!! Its like "im the oddball" that gets the one pop and run. I was thinking this is less indicative of anything serious and now I dont know.....Lovely

 

[InkedMama]

Let me add there are zillions of different kinds of twitches- and I believe maybe even als rolling looking fasics are and can be just as benign as the rest..ofcourse w/out profound weakness and atrophy.What is the TIME FRAME from neuro's w/ just twitching- that greatly puts you out of the woods- I read 3 months , 6 months and 1 year..however 1 year seems a bit much to me...Just pondering...

 

[SharonSmoove]

hey dee,don't concern ya self with all the twitchy details . i've been twitching 8 years this june and i've had so many different types, started in one toe, now all over the place, long twitches short, you name it i've had them. if you don't have life altering weakness your good to go. just relax and enjoy the rest of ya pregnancy, cause that sleep deprivations going to make ya twitch. take caresharon

 

[BartOne]

Hi Deedee,I asked that questions at my neurologists a while ago. Their message was: In case twitches would be the first symptom, weakness would come very soon after the twitching begins. (**s is a progressive disease so I think people are not going to twitch for months and months before experiencing weakness- it comes together and very quickly) So i really do think you are fine!Bart

 

[ZekesTraveller]

Some one said that its not the twitching but the company the twitching keeps.1. Weakness2. Atrophy3. twitching, but in 94% of cases you would know something is definatly wrong by then.I have poored over many cases and they all come back that 6 months of twitching with negative EMG, no weakness, no atrophy, and a clean clinical puts you in the clear nearlly 99.99%. No it does not matter how oftet you twitch just that the readings from the EMG don't indicate MND. If you are having another go around then its not ALS because with ALS you only get one go-around and then its the hole! So be happy that you are getting another go around because you'll be here to have another go around when you have another flare up. But your alive )

 

[DonJose]

My Gp also told me that **S doesn't come and go...as in good and bad days. Some days you are twitching more and somed days less and some days you have "perceived weakness" and then you wake up and you feel fine. This is NOT how **S presents. BFS presnts this way. **S is progressive. This means it continues to worsen as the days go by. After 6 months of twitching when I brought **S up to my doc, he simply said, "you look too good clinically. You'd be much worse by now". That should be enough for us shouldn't it??On another note, got a question on CK. I read that CK can be elevated in about 60-70% of **S patients. I am wondering why it wouldn't be elevated in all cases. Afterall if muscle is wasting wouldn't that be evident in bloodwork. I also read that in **S CK levels go really high...up into the 1000's. Anyone know if this is true?Linda

 

[InkedMama]

Linda, that test can be very misleading and not very accurate. You will find some neuro's dont even go by that.From what I read.And, yes what you said..... 6 months we'd know something is wrong. I guess I just keep wanting to start these twitches over and not add them to 18 months ago. Prob because they stopped..Know what I mean? lol I want to say "ohhh no this is a new set" lol which is stupid- Its the same thing I've felt before.....DUH!