? for those with als

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english_gal

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saw my nero 2day.. my problems r the same as many here twitching for about 5 months everywhere pretty much including the tounge.. had emg 3 months ago neg having another in 2 weeks.

He said that als twiches look different to normal twitches would you say this is so and has anybody else heard this...?

Casey x
 

guwainengle

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I think a twitch/ fasciculation is just what it is. Thats why you need to see a real specialist that can understand the EMG-- there are different fibrilations and sharp waves they can detect and differentiate. The Emg is not the absolute diagnostic tool-- it is just part of the equation.

G
 

Jamiet

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Sorry to tell you, but your neruologist is no good in that area (ALS), if he were, he would know the twitches are not different in the way they look.

Go to a specalist.

rgds,

jamie
 

brooksea

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Casey,

A twitch is a twitch and your neuro is a TWIT (could be wrong:mrgreen: ). Sorry just couldn't resist (use to live in England).

Do you live in England or stateside?

Did your neuro test all muscle groups on the 1st EMG?

You say you are twitching everywhere, not just an arm or leg, but all over the body?

Somebody correct me if I'm wrong, but usually the twitches start in one area and spread.

Like Jaime said you need an ALS neuro!
 

ltr

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I have also been told, more than once, by more than one doc, that ALS twitches are much different than normal twitches. On questioning them I think they mean that ALS twitches are a constant, nonstop motion whereas normal twitches don't have that "motor running" look. I have read a lot of posts on this forum that say ALS twitches are not the same as normal ones. The normal EMG's are a good sign, so maybe you have benign fasciculation syndrome. An als clinic can tell you for sure, but try not to worry, it makes the twitching worse.
 

brooksea

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Leslie,

Sorry didn't think about the difference as in twitches that occur and then stop for a while. i just narrowly think about what I have observed with the husband.

Hope y'all don't mind my attempt at humor, it keeps me sane.
 

ltr

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No need for a sorry! I just thought I would repeat what my docs have said. I have heard some real doozies, but I am hoping they are right about the twitching. And I don't want Casey to worry if it's something benign! :)
 

Jamiet

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Leslie,

You've got a point, english gal, maybe you should ask him to clarify.

Also, there are some PALS here that the twitching is not constant, so there are exceptions to every rule.. It's (being the exception) has become part of all our lives..., wouldn't you guys agree?

rgds,

Jamie
 

liz

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Casey -

Not sure why no PALS responded to your question but here's my thoughts:

Other than the docs, I don't know who gets to observe so many twitching people that they could learn to discriminate between ALS twitches and other twitches. Internet queries can't get you real far with a question like this since direct clinical exams and proper test are the only way to sort this out. If I were to tell you about my twitching
in great, tedious detail it would not advance your understanding one bit.

Good luck,

Liz
 

english_gal

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thanx

hI all thanks for all your relpying i am from the uk for the person who asked :)

I didnt think my nero was any good buts its ok cos im getting an emg with a als specialist to "reassure" me apparntly.

Anyway heres hoping the results are good im a little positive as ive been twitching for like nearly 7 months now and absoulty no weakness so fingers crossed :-D

Many thanks
 

pldo

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My neuro also said that ALS twitched do not stop- no matter what. For the most part, he said, that if they stop after you move a muscle they are benign. I have no idea though . .
 

Jeliota

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.

I've been completely obsessed with this topic for a while now, done endless research, and spoken with 3 neuromuscular specialists. None of this makes my info any more reliable (and in another thread I posted to I was completely disregarded :-D ), but just for sheets and gaggles I'll throw in my 2 cents.

Many many people have BFS and this includes lots of PALS, which makes things pretty murky sometimes when you hear people describe their symptoms.

If you have all of the following:

1) sudden onset of widespread twitching
2) twitching that comes and goes
3) a clean emg
4) no clinical weakness

then you have BFS.

That's not to say that if you have a persistent twitch in one area and weakness that you can't still have BFS. BFS commonly causes "hot spots" that twitch from days to years. It's also known to cause cramping, weakness and fatigue. If you have a hotspot and sensations of weakness but have had a good neuromuscular specialist perform an EMG on you and tell you that you are clean then, as tough as it is, you need to try to move on. Often times, that is nearly impossible for BFS sufferers, and they need to see a specialist about their ALS obsession and anxiety.

Some might want to go to the aboutbfs.com website and read the experiences of the people there. You might find some comfort.

I would also like to add that while BFS doesn't turn into ALS, BFS sufferers are no more immune to ALS than anyone. That means that some people (very few) will have BFS for a while and then get ALS. No one knows how many people have BFS because it's believed that most sufferers never notice/report their symptoms (they just haven't googled it yet :-D ), and BFS has an emotional side to it that makes the twitches worse once they are noticed. Estimates have been as high as 30% to 70% of the population experiencing episodes of BFS. Those numbers seem a bit high to me, but if you use the 30% number then 90 million americans could be suffering from BFS right now. All of the neuromuscular specialists I saw say that they see more and more BFS all the time. One of them told me that he used to only see other physicians with BFS because they were the only ones who got worried when they started twitching. He still sees a lot of physicians every year, but the general public if definitely catching ALS-mania.

As for me, I certainly don't know if any of the stressed out posters here have ALS. I pray that they are all clean. But more than that, I hope that if they are clean, that they will be able to come to grips with the emotional side of all of this.

If anyone needs any help with anything, feel free to PM me.
 

pldo

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A friend works in the insurance business, and has told me that she has seen a few cases of ALS. She said that almost always there is a "dirty" EMG, constant twitching, loss of speech/the ability to swallow, and/or extreme muscle atrophy and weakness. She said that she has seen other doctors reports where BFS is occasional twitching. There is also something called "psudo-globular" or something like that where people think they have something wrong with their throat/voice, but that it is all psychosomatic because they have done so much research. The one thing she did also say was that in the cases she has seen there is always a rapid decline. I do not know if any of this helps, but it does go along with what Jeloita had to say.
 
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