Fasciculations & Neurology Checkups

[GHayes420]

Hi Johnny. Thanks for replying to the thread. As you know I have great respect for you and your experiences which are far greater than mine in dealing with BFS. I do not take your post as argumentative in nature at all and I agree with everything you are trying to relay to the readers. I do want to clear up the three points you made very briefly....1.) when it say the ALS dr.'s that I have experience require follow-ups, I mean follow up office visits to say hello, see how you are doing, seeing if any symptoms are worrisome. NOT always to repeat an EMG. As you are aware but many are not, an EMG is often not even ordered unless weakness is detected in the clinical exam. I, like others, basically begged for an EMG. The head of the ALS clinic says that EMG are good for one year in the prediction of the onset of weakness in any given limb in general, even with a patient with ALS. That is why my doctor suggested a follow-up EMG in one year. My good friend on this board had his neuro from Mass General order the follow up EMG at six months. So my point is that it varies. However, I would like to point out that if, in one year, I do not have any crazy symptom of weakness or loss of speech then I am not even planning on returning for the EMG at this point.2.) Your recollection of the conversation is 100% accurate. However she also said, "Lets plan on an EMG in one year to be 100%.". So I don't know what to make of that. The chance of a person NOT getting ALS in their lifetime is 99.9%. Supposedly one in a thousand. I put my odds at roughly the same as that. (on most days )3.) As I said above, she says without obvious symptoms of weakness, she feels any repeat EMG before one year is not necessary. She asked for mine to be repeated in one year. She is aware of the Walton study as well as Carvalho's work and also very familiar with the overwhelmingly positive Mayo study. ***I would also like to point out that she says she sees may cases of people who ask repeated for the EMG when it is not necessary. She has one patient with BFS for 20 years and she continues to return a request and EMG every year. The doctor does it just to oblige her, knowing it will of course be normal. Sound like many of us here huh? I still think they do these to cover their butts more than based on their actual worry of an ALS dx in most ALL cases.***And just to repeat what you and others have said, if you have seen a qualified neurologist and his/her dx was BFS with or without the EMG, then that is exactly what you have. Take this dx and learn to live with your symptoms and deal with the sometimes accompanying anxiety. Best wishes to all of us twitchers out there living with this benign however annoying condition. You are not alone.G

 

[MarksmanS]

If you are worrying after reading these reports and posts...STOP IT!You have to look at facts. Als is very rare but it does have a 'normal' course which is that a person dies within 2-5 years of being diagnosed. That diagnosis NORMALLY takes months, not years. Therefore, by the time years have passed the person is extremely ill. Now you are looking at cases that are, assuming their accuracy, very atypical. What are you going to do? Worry for 8 years??? 9 years??? Stop it! You are more likely to get hit by a bus than to have a variant of als that takes years to unfold. This is irrational fear.Live!!

 

[TwitchyMD]

Hey, you misunderstood the first article. Its again article from dr.Carvalho who I correspond quite often with.It only says that in patients WITH ALS muscles with preserved strenght have only fasciculations as their only abnormality and that it is different from FPs in already weak muscles.Chrissi, professor Carvalho is not digging for exceptions as you said. Unfortunately, he only published few exceptional cases he had on his neurology department as he is well regarded and his reports are trusted (he his co-author of Al Awaji criteria, replacement for El Escorial criteria for ALS diagnosis that is being used by all neurologist around the world). He does disagree with Walton study: he said he had and saw cases with more generalized fasciculations than only in lower legs. He also told me he had a man with bilateral tongue fasciculations that were benign - he admit its unusal but did exist.