Beware of Not-So-Benign Fasciculations

[BlutenOwl118]

Hi everyone

according to a study :"Not-So-Benign Fasciculation
Andrew Eisen, MD, FRCP(C), and Heather Stewart, BSc" ,
Twenty-one of 312 (6.7%) consecutive patients seen in ALS clinic, who fulfilled the criteria of typical ALS, had fasciculation as the first and, at the time, only manifestation of their disease. The mean time interval between developing fasciculation and other deficits was 7.2 months (range, 2.4-13.6 mo) .

according to this study one can develope als after a long time of just having fasciculation (13 months+) without any other symtoms like weakness or reflex change etc.

i think this study contradict most of what we know about bfs, as it can develop from just fasciculation to als even after 13 months.

what do you think??????????????

 

[jsageurge]

This study has been discussed several times on this site. There was another Israeli study with about the same number of patients where the percentage was 3%. I personally saw another with about 100 patients and the percentage was 0% (the few that had fasciculations at presentation all had other symptoms as well).

But they are all irrelevant for several reason. First, BFS twitching and ALS twitching are caused by different mechanisms. So this can be compared to a study saying that 75% of brain tumor patients had headaches as their first and only symptom. So what? Millions of people get tension and migraine headaches, and there is absolutely no relationship between them. Secondly, this study says absolutely nothing about the characteristics of the twitching. Was it continuous and progressive? Was it restricted to the single limb that first developed weakness? Who knows? There are over 1300 posting members on this site who read “BFS In A Nutshell” and identified with the way it describes twitching. So far 0% have reported developing ALS. That is relevant and it should tell you something.

I read about this study when I was only twitching for about 2 months and it did not concern me because I took the above facts into consideration. You should too. Then forget about it!

y’all have a merry Christmas and a great 2007.

 

[MyUsrName94]

I agree this study has been sited many times before and is not worth wasting your time reading.

Bill,love the picture of the German Sheppard. Had mine 15 years till just a few montsh ago. .Great Dogs

john

 

[garymills]

normal emg, no als. That is a fact and this study backs that up i believe....I have read the study, but it has been a long time ago, but my memory tells me that these people didn't have a normal emg.

Take care,

Gary

 

[massagefanrx]

But, is that a reason to get an EMG even if a doctor doesn't seem to feel one is necessary?

 

[SwiftTaySwift20]

As far as I know no one registered on this site diagnosed with benign fasiculations or cramp fasiculations has gone on to develop MND. I was recently looking through Adam & Victor's "Principles of Neurology" text book that was copyrighted in 2005. Chapter 55 is titled "Disorders of Muscle Characterized by Cramp, Spasm, Pain and Localized Masses." In that chapter there are headings for "Persistent & Benign Fasiculations" and "Cramp-Fasciculation Sydnrome." Under benign fasiculations it states that "In cases reported by Hudson & Colleagues the condition even after years did not progresss to spinal muscular atrophy, a polyneuropathy, or ALS. Eventual recovery can be expected. This conforms to our experience and to that reported from the Mayo clinic where 121 patients with benign fasiculations followed in some cases for more than 30 years showed no progression of symptoms and did not acquire MND or neuropathy.

Under Cramp-Fasiculation syndrome it states it is a variant of benign fasiculations in which fasiculations are cojoined with cramps, stiffness and systemic features such as exercise intolerance, fatigability and muscle aches. Although affected individuals may be to some degree disabled by these symptoms, the prognosis is good.

I was diagnosed with Cramp-Fasiculation syndrome so don't get too alarmed by their statement of "disabled by the symptoms." For me it means I just need slow down a little bit to prevent cramping. Just remember the prognosis is good but it might take years.

The only way to really get over the fear of MND is time. Seeing that things remain stable over time with slight fluctuations every now and then.

The textbook is availabe at Borders in case you want to read the chapter yourself.

Swift_TaySwift20

 

[REDRIOT]

There could be many possibilities and several outcomes that may lead to ALS. I think its fairly safe to say that the majority of people however will not gain ALS as a result of this. Its probably something to bear in mind if symptoms change for any reason. Matt

 

[MarksmanS]

Anyone concerned with this needs to search the site for a full analysis. This study is very frightening when you first read it two months into twitching (excpept for Bill but he's a stud )

The issue here is these patients were asked to report their first symptom - they reported twitching. That said, it *does not* mean they would have had a clean clinical exam or emg. Simply they report remembering that first...yes, months later when the have serious weakness then their dx is most obvious but this would probably have been uncovered upon earlier exmination.

I used to think that I had to pass 13.6 month but don't go there...it's hell. And when you pass it why couldn't you be the one case that goes 16.6 months? You see thrust your doctors and keep on living hard.

 

[BandersnatchF]

This study has been discussed a lot. Let's assume that the study is right, and that 6.7% of ALS patients get fasciculations first. That means that, in a single year, your chances are 7 out of 5,000,000 (that's 1 in 700,000) that you're one of those unfortunate people. If BFS occurs in 1 in 200 people, your chances of having ALS if you're twitching are 1 in 700,000/200, or 1 in 3500. It's higher than the rate in the general population of 1 in 50,000, but not much.

Also, as just about everyone else here has said, the chances are good that a neuro would have picked up something wrong on a neuro exam had you come in for one. The chances are even better (pretty close to 100%) that, if you had ALS, your EMG would be abnormal in some way when the twitching started—this point was raised in a response to the study that was published in the same journal as the study itself.

Keep in mind, too, that some people will get ALS after they have BFS; most neuros don't believe that BFS has any effect on your chances of getting ALS (it's neither more likely nor less likely). That means that 1 in 50,000 twitchers will develop ALS, just as 1 in 50,000 non-twitchers will.

Don't sweat the study. As I said above, twitching before ALS is exceedingly rare, even assuming the study is right. If you've seen a neuro, s/he would have picked up something, even if s/he didn't know exactly what it was.

 

[ytewestGo99]

I love new members, they're so cute !!!

Relax my friend, and remember this ...

Form VERY respected Neuros:

"Unless there is EMG evidence, fasciculations are not diagnostic for any disease that we know the etiology of. Benign fasciculations occur without EMG changes or muscle weakness. They go away on their own (most of the time) and do not increase your chances of coming down with ALS."

"How many people suffer from benign fasciculations, and how often do they last on average? Sporadic fasciculation is incredibly common, occurs in the majority of normal individuals off and on. Some individuals are more perceptive to these twitches and tend to report them, sometimes from fear of having a serious neurological problem. Most experts agree that a subset of individuals have more prominent, widespread, and persistent fasciculation than should be seen normally. These people often diagnosed to have the benign fasciculations syndrome. This syndrome is obviously quite common, but a prevalence figure is not available. One hundred and thirty seven individuals with benign fasciculations were identified and studied at the Mayo Clinic over a period of 28 years. Of these, 121 were available for a follow-up interview after a mean of about seven years; none had developed ALS, and about half had had a significant improvement. Interestingly, about 16% of the cases have a viral infection preceding onset of symptoms, and about 20% have emotional stresses."

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Also, that study gave no information about the physical exam or EMG results. One member of this board actually contacted that clinic if I remember correctly and was told that these folks had bad EMG's and or physical exams along with the twitching...

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We've all read that study and nobody on this forum has ever developed ***. Nor does twitching "develop" into ***, that's not how the disease works ...
Also, reading through your other posts, body wide twitches are of the benign variety ... you have BFS ... I know it's scary because there is no explanation for it and then you Google muscle twitching and get freaked out but after 1 year, you are VERY OK !!!

Take Care,

Troy