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Hookah

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I am 24 years old and first started noticing persistent twitches about 9 months ago. I had a full neurological workup at the time, including a clean EMG.

A second clean EMG was conducted 2 months after the onset of symptoms and I was diagnosed with BFS. I was very relieved and resolved to get in really good shape with my new lease on life. I've added quite a bit of muscle mass and was feeling great.

Since then, my hypochondria has reared its ugly head and has me reading nasty things on the internet.

I have read that ALS can sometimes present with fasciculations for a long time before weakness occurs. I have read on this website that twitching can be the first sign for quite a while.

My fascics seem to be getting worse and more widespread, but I haven't noticed any weakness as of yet.

In your experience, is it worth getting another EMG? I can't seem to find any solid information on the timetable of symptoms and EMG results (yes I have read the stickies but the answers are unclear - I think the disease, like many diseases, works differently in everyone, which only adds to how terrible it is!)

I have read one abstract of a study where a man was eventually diagnosed with ALS after having only fascics for about a year, but this seems that it might only be part of the statistical certainty that some people with true BFS will eventually "get" ALS as well.

Sorry for yet another twitching question. I just want to know if I need to keep pursuing this.

One other question: Do both ALS and BFS twitches cease when the particular muscle is flexed? Mine always stop when I am actually using the muscle. I haven't read about any discrepancy between bad and good twitches, so I might just be barking up the wrong tree on this one.

Sincere thanks in advance to anyone who selflessly takes the time to reply.
 

Blizna

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Hi,
Im exactly in your shoes! I have 9 months fasciculations, Im almost 23..

Dont worry, the case with man with fascics was that he has mild weakness without atrophy and fascics for more than year. This case is often taken out of context.

If your fascics disappear when you move muscle, you are totally OK, its sign of BFS - you can find it out on many places.
 

hopingforcure

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BFS is definitely more likely to stop when you flex the muscle, and that I am sure of. Als twitches just do not stop like that. Weakness and Atrophy, mean so much more than the twitching in itself is not malignant.
I would think you have had enough emg's. While none of us doctors, the damage would have been done and seen on emg already, is very likely.
 

lhagsjr

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Building Muscle...

once i read this, i stopped reading. If you can build muscle u dont have ALS...
 

wandabates

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i'm confused,

I am 24 years old and first started noticing persistent twitches about 9 months ago. I had a full neurological workup at the time, including a clean EMG.

A second clean EMG was conducted 2 months after the onset of symptoms and I was diagnosed with BFS. I was very relieved and resolved to get in really good shape with my new lease on life. I've added quite a bit of muscle mass and was feeling great.

Since then, my hypochondria has reared its ugly head and has me reading nasty things on the internet.

I have read that ALS can sometimes present with fasciculations for a long time before weakness occurs. I have read on this website that twitching can be the first sign for quite a while.

My fascics seem to be getting worse and more widespread, but I haven't noticed any weakness as of yet.

In your experience, is it worth getting another EMG? I can't seem to find any solid information on the timetable of symptoms and EMG results (yes I have read the stickies but the answers are unclear - I think the disease, like many diseases, works differently in everyone, which only adds to how terrible it is!)

I have read one abstract of a study where a man was eventually diagnosed with ALS after having only fascics for about a year, but this seems that it might only be part of the statistical certainty that some people with true BFS will eventually "get" ALS as well.

Sorry for yet another twitching question. I just want to know if I need to keep pursuing this.

One other question: Do both ALS and BFS twitches cease when the particular muscle is flexed? Mine always stop when I am actually using the muscle. I haven't read about any discrepancy between bad and good twitches, so I might just be barking up the wrong tree on this one.

Sincere thanks in advance to anyone who selflessly takes the time to reply.

I just had another appointment with my neurologist and i have had an emg and nerve velocity test and it showed i had denervation in my left side,and i have been having twitches in my left arm and leg,and he just told me today that twitches and numbness was not a symptom of mnd..but i have read that other people and dr's say it is.i am so confused about this.i have had alot of trouble with swallowing,and now it is chewing and swallowing along with weakness in my +arms and legs,spasms in my stomach and feet,throat muscle pains when i swallow or cough from eating,and i do't understand how one dr can say one thing and another can say the opposite.did you ever have trouble swallowing or cough when you ate or drank anything?that is where mine started,the dr's thought at first it was acid reflux,so they did nissen fundoplication surgery on me,since that i have had my gallbladder out,had rectal prolapse from all the coughing and constipation ,they ended up cutting 18 inches of my large intestines out,and if they do not get something done about my swallowing and coughing it will happen again soon,so i am in great need of answers,that was one of the worst things i have ever been through in my life.please if anyone has any of the same problems please let me know.good luck with your problems also.wanda
 

CindyM

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Hi Wanda. Welcome to the forum, although I am sorry for the reason you are here. And I am sorry you are getting poor test results, too. Let's hope these things can be explained soon, and let's hope the explaination is something treatable! Meanwhile, we will try to help with the waiting adn testing process. It can wear on your nerves, I know! Cindy
 
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