Question on EMG and clinical exam again - hopefully my last one

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latzable

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Beth, Wright, Hopingforcure - and everybody that has a good knowledge on these things....

I have been diagnosed of BFS after a clinical exam and an EMG at the swiss ALS-clinic after four weeks of fascics (widespread, now also hotspots in the left sole of my foot).
 

latzable

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are signs of the first motoneuro damage (eg abnormal reflexes) always present in the clinical exam when fascics as signs of the 2nd motoneuron appear? or can fascics due to ALS appear without any abnormality in the clinical exam?
 

BethU

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Hi, latzable ... I'm not familiar with the website you refer to, but I have to caution you that most of the people on this forum (and no doubt on other similar patient-support forums) have no medical training whatsoever, including me. Wright does, so he will sometimes answer technical questions, and you can trust his responses.

The purpose of this forum is for moral support and sharing tips on how to live with this disease. Naturally, we get into discussions of symptoms, etc., but these should not be used as medical references.

The only one who can truly tell you what's going on with your body is your own neurologist. Comparing responses from different people on different Internet sites really is a waste of time, and it's probably going to be very misleading, as well as confusing.

After saying all that, I have to admit I've spent entirely too much time doing exactly what you're doing ... but the Internet is not a good source for medical information, unless you stick to "official" sites, like the various ALS societies or university sites.

I go into all my appointments with a list of questions, and usually get straight answers from the neuro.

Good luck!
 

wright

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Latzable

A few points

In another one of your threads, you said that they didn't find any fasciculations during your EMG: that might be because your muscles weren't twitching at the time. That is something we see a lot on here with people saying they twitch . . . and then when they go to their neuros . . . the twitching stops. ALS twitches don't care whether or not a neuro is examining you or if they are being seen by you in the confines of your home. Once ALS twitches start, they don't stop. If twitching stops, that is typically a sign that they are benign.

If you read what you copied and pasted in your post carefully, it appears as if the questions are not being answered. Question 2 is not addressed at all. Why does that matter you ask? It matters because we really have no idea if what you have posted is an entire conversation or pieces of conversations stuck together. As I always say, you VERY RARELY get the full story by reading stuff on the internet.

The website you are quoting is a bit outdated. The information is not current and I'm not sure who is answering the questions. It is not indicated whether that person is a neuro or a technician. Given many of his/her answers, I think (just my opinion) he/she is a tech and not a neuro . . . and if he/she is a neuro, sure doesn't appear to be an ALS specialist.

This leads me my last point: you HAVE been to an ALS clinic and got a diagnosis of BFS. What on earth makes you think that some website or anyone on here is going to know better than an ALS specialist, whether or not you have ALS?

My advice: feel good about life because you are still able to do things you have always been able to do and will most likely lead a relatively long life. There are many on here that don't have those luxuries.

You said that this should be your last question: let's see if that holds true.
 

hopingforcure

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Agree totally with Beth and Wright,
I want to add that I am completely familiar with the site you mentioned, and want to remind you that EMG is only part of the picture of als, it is more to rule in or out als than to make the complete decision, you would absoulutely have to have a neuro exam that was als pointing, along with the emg. Like the others have said, a twitch itself is benign until proven malignant.. Relax............
 

latzable

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Wright? Beth? Hopingforce?

thanks everybody!
my fascics are annoying me and despite my clean neuro exam and my clean emg i doubt this could really be just a consequence of my original fear of having cancer (had to do a biopsy).
i read those stories about als-related weakness appearing months or even a year after the onset of fascics and wonder if these stories are true. Wright? Beth? Hopingforce?
Wright: I know, hopefully the last question, but this bothers me;-)
 

wright

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Those stories are anomalies. Furthermore, it's my opinion that in most of those cases, the weakness was probably present and progressing, they just didn't notice it. You are undoubtedly testing yourself multiple times a day and every day, so you are going to notice whether or not you're weak.

If you're going to sit there and worry about getting ALS (because as of right now, there is absolutely no evidence you have it), you should also worry about getting struck by lightning, getting hit by a car and/or bus, having the sky fall on your head, etc. etc.

RELAX!
 

latzable

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;-)
Well you know wright, 2 of 20 pals with their own homepage said they had just fasics and began to fall down 4 months later only...that is 10 percent, not just a unique case. But i guess their emg would have been dirty right from the beginning...!?-;)
Thanks for your deeply appreciated answers wright!
 

latzable

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By the way: my fascics did not all Stop during the emg. They saw a few but said there are no als-related signs and potenzials
 

wright

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Yes, those PALS you referenced that developed clinical weakness would have had a dirty EMG at the onset of their fasics.


Your story just changed. First you said your neuro (an ALS SPECIALIST by the way) didn't pick-up any fasics in your EMG and now you say he/she did. You also now share with us that your neuro said your fasics were benign based on that EMG. WHAT . . . MORE . . . DO . . . YOU . . . WANT?!

GO RELAX and feel good about life and be done with this.
 

latzable

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Yes, what more could i want...my fascics drive me crazy and i sometimes doubt this is simply benign. Does an emg in the four limbs also detect proximal onset? Do you know? My fascics began in the abdomen...
 
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