Worried But Als Please Read And Bfs Please Read

[awieleba]

gbrown

did you start with twitching? or did you twitch once you noticed weakness?
I know it varies. some people twitched first for awhile (a year or 2) then the weakness set in. they say that is lower % of folks but it seems on this site that there are alot of folks who twitched first. one person twitched for almost 7 year! MY neuro acts like twiching as a first sign is no big deal, becasue of the text book %'s. well, I told her there are alot people that start with twitching!

 

[crystalkk]

Lace,

What autoimmune disease do you have?

 

[pfox280]

So, I am new to this site. I am really nervous about having ALS. I went to the Neurologist about three years ago and she did not seem to think that I had anything other than BFS, depression from being obsessed with my twitching, and just being too anxious. After doing tests of course. Including an EMG....
I did not want to hear that really. I wanted something concrete that could tell me how to manage these things or just get rid of them or get a horrible diagnosis so I could stop worrying.
I still have twitching and I am still obsessed with the notion that I have ALS. I have a scalloped tongue and it twitches occasionally. But it has not gotten really worse. NOthing has gotten worse really.
I do about 15-20 pull ups a day and bike to work whenever I can. And I just got back from a vacation where I hiked and climbed with no problem. I feel a lot better when I work out. Is this not possible when someone has ALS? I just feel so worried because these twitches don't go away. I mean they are not constant though, its a twitch and then nothing. They seem to rear their ugly head when I am stressed out. Like recently breaking up with a my boyfriend and getting a new puppy and just being super absorbent to emotions and feelings.
I guess that I am just a psycho? It is just that I always hear that I am just crazy, this is why I don't talk about it to anyone really.
Thanks.

 

[awieleba]

pfox,

If you have had these for 3 yrs and are still biking and working out, that should help ease your mind. If you dont have muscle loss or weakness, then it is likely bfs/stress. I dont like when docters chalk things up to stress but if you have no decline over 3 yrs or anything....try not to worry. I know it is easier said then done. If my body did not display so many other symptoms of als, And it was just twitching and I could work out and ride bike, I would not be here fearing als. So, try to not and go be active...

 

[Loriliz]

I think I read somewhere that one of the primary symptoms with BFS is an obsession with having ALS or MS. Probably part of whatever causes the twitching.

 

[Zaphoon]

Loriliz,

I'm in that long process of being diagnosed. Weakness started in my r arm and then both legs and then L arm. I noticed fasciculations only about 3 months ago and weakness has been progressing for a year or so. My EMG was normal (performed just after the twitching started) 6 weeks ago. MRI and countless viles of blood tested for who knows what were all clean. Good news, its not ALS at this point. Bad news is - no diagnosis. So, with nothing diagnosed, no treatment is being given for progressing weakness, twitching and cramping (not to mention the stiff muscles which render me unbendable). The neuro has me scheduled for a 3 month follow-up to see what kind of changes have will have taken place and probably another EMG. I wonder if anyone with this kind of stuff started out with a clean EMG that eventually went negative.