Worried But Als Please Read And Bfs Please Read

[laceworx1]

So I got diagnosed 4 years ago with BFS. I experience twitching ALL OVER MY BODY almost DAILY. When I get more stressed out, I have more. I have them in my tongue and everywhere else. When my body is fighting off sickness I twitch more. When im Pissed off, I twitch more. I remember the first year was gruling. Sometimes even still my brain says its hard to swallow, or ill slur, but it comes right back to where im supposed to be and im fine. The twitching goes on vacation sometimes, but always returns. Sometimes RIGHT AFTER I twitch the muscle that was twitching will feel wierd or week for a moment but again, returns quickly in a matter of seconds back to normal. I fire off in my feet, neck, face, back, front, eye, leg, fingers etc.. 4 years ago I had a clean EMG. For some reason I didnt twitch in the dr's office. I have also had that feeling of girgling type twitches under my skin. I feel sometimes like fireworks just go off in my body :)

Ok, here lies the worry part. The ONLY reason I am worried, and maybe someone with ALS can help me feel better. I worry because, I have a neuro appt on AUGUST 1st, to go get checked out. 2nd because I heard of some doctor who had twitches for 15 years before being diagnosed with ALS, so im a little worried, and guess WHAT WORRYING IS DOING TO MY BFS. Since I made the appt, IM LIKE THE DISNEY LAND FIREWORKS show in my body. Sorry, its been going on for 4 years and I have to laugh at it a little. I also suffer from crohn's disease and osteoperosis from the crohn's. I personally think a lot of my twitches and AGAIN THIS IS JUST ME SAYING THIS and not a dr, but I think it has to do with dehydration and malnutrition. Anyhow my swallowing and feeling like there is a lump in my throat and hoarsness (WHICH I DO GET) is due to GERD. Acid reflux disease, and PEOPLE THAT ARE SCARED OF ALS, ( you freaking out will cause acid reflux and more twitching BTW)

Well, thank you for reading my novel and I hope to hear from someone about the 15 year thing and for me not to worry to much about my tongue twitching. Again I have not had a EMG in 4 years and or seen a neuro so im a little scared.

:-?

[wright]

Just because you have BFS doesn't make you immune to ALS. Approximlatey 5,000 people in the U.S. are diagnosed with ALS each year: that doc just happened to be one of those 5,000 people. t was simply a matter of probabity.

If you have had twitches for 4 years with no progressive weakness or atrophy, then I think you can be rest assured that those twitches are due to BFS and not ALS. If you have progressive weakness with atrophy, then obviously you would want to call your neuro. In the meantime, relax and get on with your life.

[awieleba]

Well, that is alot of twitching! I am unsure if I can handle that for anther 6 months!!

You may be onto something with the chrons. I dont have that but developed a intense colon disease (c.diff wich led to the worst case of colitits that they had seen, the entire colon was swollen and filled with mucus). I was in the hosp 3x over a 5 month period. When I finally was getting at the end and healed, that is when my twitching started. I did have horrible weakness and jello legs prior while being sick. I dont have osteoporisis but i do have osteo arthritis. Still praying daily that all these things with my body are autoimmune.

Well, dont be nervous about the emg, it should give you piece of mind.

good luck!

april

[dimd00d]

Wow, you sound exactly like me, although I am doing it just for about an year - firing on all neurons here, including the tongue :)

Wright is right, having BFS doesnt make you immune from ALS, but doesnt make you more susceptible either - if you dont have any weakness - you are fine.

[laceworx1]

So you have BFS and you twitch in your tongue too?


Wow, you sound exactly like me, although I am doing it just for about an year - firing on all neurons here, including the tongue :)

Wright is right, having BFS doesnt make you immune from ALS, but doesnt make you more susceptible either - if you dont have any weakness - you are fine.

[laceworx1]

so interesting, how long have you been twitching? and is it everywhere.

[dimd00d]

So you have BFS and you twitch in your tongue too?

Yeah, twitching in the tongue begun few months after the twitching started. The neuro was mildly surprised, probably because the tongue is innervated from the bulbar region.

I also have teeth marks on the tongue if that helps any, and no, they dont seem to get bigger - I've been monitoring em for couple of months.

The first twitches started more than an year and a half ago, gradually it spread over the whole body and is more or less constant now. I cant notice any weakness, neither can the neuro - I can jump around on the toes of one leg, walk on heels, been lifting weights for the last few months and im definitelly gaining muscles. I havent got an EMG, partially cause I have a phobia of needles, and partially because the neuro thinks the symptoms (widespread twitches, normal tendon reflexes everywhere, occasional neuropathic pain) dont warrant it.

Well, I guess we're just another pair of BFSers :)

[awieleba]

well, it is good to hear of some long twitchers w/o weakness!

I have had a tongue twitch, not often. And I have teeth marks on my tongue. I thought/think that it is scalloped tongue. It is a little reasurring to hear someone else does too.

You must be a little concerned about als to be on the site? or are you trying to reassure twitchers?

take care!

april

[dimd00d]

Well, to be honest, every couple of months I get really scared that it might be ALS, its like a worm that gnaws at my mind :( But im still only twitching and life goes on.

[awieleba]

yes, I can relate. It is such a strange thing to have. when you never had the twitching before, then you do. It just seems like how could this be normal? well, only time can tell. I wish you the best ....twitchey.

[laceworx1]

Even though I have been twitchy for 4 years, sometimes I dont notice them very much, although I have to say that since I have made my next neuro appt ive BEEN VERY TWITCHY, and feel weak, im POSITIVE it is psycho symatic, but even though its been going on for YEARS, Of COURSE im hoping I dont have ALS, and of COURSE im frightened. I have yet to get married or have kids and im 32. So that would be AWEFUL. My fear was why I was writing in the first place. HOWEVER, I ALSO am able to play tennis with no problem and dont have atrophy that I have noticed at all. So im SURE im fine, but yeah a little scared still. I seem to think its like anxiety or panic disorder. Once you have a panic attack, you just have it for the rest of your life. The only time ive noticed weakness, is RIGHT after the twitches but only like I said, for a few seconds, then right back to normal and I think thats just from the muscle spazing out. :-? I also have a auto immune disease which personally I THINK has a lot to do with it, maybe im wrong, but lacking in vitamins and being mal nutritioned can cause all sorts of things, why not twitching muscles.

[Darlav]

I'm sure this has been asked before, but is there a noramal amount of time when weakness/atrophy would show once twitching has started if ALS is present?

I thought ALS was pretty progressive, so would weakness show up rather quickly?

Thanks,
Darla

[laceworx1]

I think it is proggresive rather quickly, but that is a good question. I dont know. I heard about a doc who twitched for 15 years then died of ALS, but apparently he had other symptoms that were not disclosed to me, so im not sure . Id like to know that as well. I think that someone who has ALS should answer that, and when they do, I would like to know as well.

:confused:

[awieleba]

Hi,

I gotto say I am jealous about your tennis!!!! I love tennis. Last year I played on a suburban travel team and an in house team. It is really a bunch of moms, we were not all that great but did make it districts, I had to retire becuz I was pregnant and it was95 degrees and my body got tired. I cant believe a year ago I could do that and now all this.....waw, waw, waw. I can still walk 9 holes of golf, so it could be worse. I pray that one day I can play again.It is not that I cant walk, its my thighs that are weak and get shakey and one stiff leg. You know that ya gotta have those thigh muscle for split stepping and lunging. My hubby says, lets just hit the ball around slow and see how you feel.:-?

anyway, 4 yrs and no weakness, w/tennis----you are doing good. But of course going to a neuro for a check/emg is a good thing. it can ease your mind. the twitching can just naw at ya!

Have fun and play a match for me!

april

[gbrown]

Darla:

The progression of ALS varies from person to person. There are PALS who have had very slow progression and lived with it for 15 or more years and then there are PALS who last less than a year. No one knows exactly why this happens, but as I stated in another post, it has come to light that PALS with higher bad cholesterol levels seem to progress slower.

I have had symptoms for 7 years and dx'ed for 2 years and am still fairly functional, although I do need quite a bit of help.

As for twitches or fasciculations, I have had them since the beginning in my legs, arms, hands, and fingers. I don't pay much attention to them now.
Gordon

[awieleba]

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.