Comments on Barts Exam that EVERYONE should read

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Comments on Barts Exam that EVERYONE should read

Postby Arron on June 21st, 2008, 2:39 am

Barts thread named "Back from Neuro" has a lot of facts in it that I would like to support and comment on because I get asked about this stuff so many times and I have said all of those same things, over and over again.

Bart: I gave him a list with all my symptoms (fascics under feet, fascics 24/7 calves and thights, knees, shoulders, hands, back, cheecks. Tickling feelings on hands, shoulders, cheecks, strange feeling in cheeck, crampy hands, vibrating tongue, cramps in cheecks, cramps in legs, arms, vibrations all over, tremor and so on…) He read them and said: “If I read them one by one I don’t find anything that worries me, if I put them all togheter it brings me to BFS and anxiety.”

Arron: This is because ALS twitches are COMPLETELY DIFFERENT than BFS twitches. ALS does NOT "shotgun start" like that, and it doesn't jump around like that. It starts in one place and MIGRATES from that place forward, leaving a path of unusable, wasting away muscle in its path.
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Bart: I also showed him my arm because I thougt there was atrophy. He laughed. “This is no atrophy at all”

Arron: EVERYONE has differences between their left side and their right side. No one is perfectly symetrical. If you go looking for oddities, you WILL find them.
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Bart: So now everything I asked, he replied and said:

1)Where, when, and how the fasciculations appear: “doesn’t matter, not important”

2)What about little ones, fine ones. I heard they are more due to ALS: “Huhm, you know more than me, no, that’s nonsense.”

Arron: OK, how many times have I said on here that "twitches" are NOT a sign of ALS? BFS and ALS twitches are completely different and most neuro's aren't even interested in hearing about them or seeing them. This is because they are NOT the sign of ALS. The sign on ALS is loss of muscle control, atrophy, REAL weakness, clumbsiness (which gets continually worse) and an EMG that confirms it.
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Bart3) Widespread twitches and bulbar dx: “Here you need to use your common sense, if you are twitching all over and it’s due to ALS then a) you would have had clinical issues b) you are at a stage when it would be very clear there is something wrong c) EMG already pointed out d) you wouldn’t be able to speak normally anymore”

Arron: Here it is again with WIDESPREAD TWITCHING. That is NOT how ALS works. This is why his neuro wasn't interested in the twitches or in the way he was twitching. Once you have twitches associated with ALS, the disease is ALREADY taken a good hold and is running its course. An EMG WILL confirm this. bart was already twitching all over for some time by then, so FOR SURE, SERIOUS symptoms would have manifested by then. These aren't symptoms that come and go, or are bad one day and not too bad the next. It is RELENTLESS and CONTINUOUS.
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Bart: 4) Does bulbar ALS appear with weird shakes, something in throat, biting on tongue? “Not at all, it’s diffuculties swallowing and speaking. Not saying words wrong but not being able to, as if you were drunk (very early stage) Also bulbar is the quickest one and you will know this immediately. It doesn’t hide, at your stage (7 months) you wouldn’t be able to say anything anymore”

Arron: I don't even need to comment on this one. Can he make it any clearer? My guess is no.
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Bart: 5) I read 6% of ALS come with fascics first, is there a time limit to be sure? “In my 40 years of expierence I have never seen a ALS patients with only fascics as an only symptom” It’s true some people come here with fascics and that’s the only thing they complain about but when we do a clinical we notice that there are other things wrong with them”

Arron: GOD I wish that crap would go away! Some IDIOT at the Mayo Clinic did a LAME study on ALS patients and concluded that SOME people "presented" with twitches. This is THE most WRONG and OUT OF CONTEXT conclusion I have ever seen!!! Even the writer of that study later came out and said it was MIS-WRITTEN and MISLEADING!

The so called 6% were people that only NOTICED their twitches first. They NEVER had an EMG until their diagnosis. You can NOT clinically diagnose ALS without an EMG, PERIOD! Just because a couple of patients NOTICED twitches as their first symptom CERTAINLY doesn't mean that is how the disease itself started!!!!!! I can not stress this enough! I wish that test would just go away!

If you SEE or FEEL twitches first, and you go get an exam and an EMG, if it ALS, it WILL show up on the EMG, period, end of story. There are no grey areas about it. Twitching from ALS is a SECONDARY symptoms of the disease ALREADY disconnecting nerves and running its course CAUSING the muscles to "quiver" (fasciculate). It doesn't get any clearer or simpler than that. ALS NEVER presents with twitching alone. It WILL have a dirty EMG because the quivering muscles are twitching BECAUSE the disease has already taken hold. Sharp waves, pops, and clear denervation WILL be seen on the EMG, even in the doctor was blind in one eye and couldn't see out of the other.
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Bart: 6) Do you see clinical abnormalities in every clinical in every stage of ALS? “Yes”

Arron: One word says it all. Can it get any simpler or clearer than that?
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Bart: 7) Does clean EMG really rule out ALS? “ We don’t need a EMG to RULE out ALS, we need it to CONFIRM ALS. If there is something wrong we definitely see it in the clinical.

Arron: It isn't "twitches" they are looking for. It is other symptoms AND theEMG that confirm ALS. Twitching alone has ZERO to do with ALS. I have said that on here about 100 times. I can't say this enough!!! Twitching without CLEAR and SERIOUS symptoms, AND/OR... twitching with a clean EMG is NOT ALS, period! When you try to dispute this with experts on this forum or with your doctor, you are only wasting your time and the doctor's time. You do NOT need 2, 3 or 4 EMG's to rule out ALS. ONE clean EMG is all you need.
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Bart: 8 ) How come in some EMG’s they see fascics and in some not? (this is a technical explanation of the prof and very diffucult for me to say in English but I’l try) “ The EMG is like a kind of eye, and also as big as an eye. So if they put it in one muscle in only sees that part of the muscle (as big as an eye) If you are not twitching there at that moment they won’t see it although you are twitching in different areas. If you happen to twitch there at that moment they see it.

Arron: Let me try to put this simpler. It is because on ALS you have true fasciculation which are fired off by electricity youer body produces to command muscles to move. Most BFS twitches are NOT true fasciculations which are NOT fired off by electricity. Some peopel do get true fasciculations along with non true fascic's with BFS. NORMAL people get them all too. Ever have your eye lid twitch when you were a kid? It s common, and thiose are usually true fasciculations. The bottom line here is BFS twitches happen for an ENTIRELY DIFFERENT REASON than ALS twitches. They are not the same. They don't look the same and they don't act the same... not even on the EMG.

Barts neuro said it as clear as you can when he said: With ALS it’s different. The muscle doens’t get impulses of the nerve anymore and it shouts outs to the other muscles to reinforce. So they give a little of their strength to it, result: continous twitching, fibs, sharp waves,… (true fasciculations that show up dirty on the EMG)
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Bart: 9) I heard a lot about the CK level, why haven’t they tested that with me? “Not necessary, that we do for muscle diseases, ALS is actually a nerve disease. We only do this if we suspect a muscle disease. And we do not suspect anything with you.

Arron: This is one of the big things I have tried to explain over and over again. ALS is NOT a "twitching disease" and it is NOT a muscle disease! It is a disease that disconnects the nerve pathways between the brain and the muscles. Without this information superhighway, your brain can not send commands to your muscles anymore, so they quiver and begin to shrink (atrophy). This happens as a RESULT of the disease.

Ever see a kid with a broken arm and when they get the cast talken off in 6 weeks the arm has shrivled up? This is because the muscles in that arm could no longer be used. It only tooka couple of weeks to see REAL atrophy. Not months or years like some people on the internet CLAIM it can take. If you have ALS, you lose the ability to use muscles. As a RESULT, they twitch and shrivle up. It doesn't go away and it doesn't come and go. This again is why neuro's are NOT looking for twitches or CK or CPK levels and such when looking for ALS. The problem is, most people know just enough to get themselves into trouble, and then they listen to a bunch of people that know less about ALS and BFS than us experts on here know about rocket science. Your neuro isn't stupid. It isn't his first day. Your case of twitching is NOT the first he has seen and he is not interested in your twitches because they are NOT a sign of ALS like you thought they were. Just because YOU think they are or were told they are by someone that obviously knows NOTHING about ALS and BFS, doesn't make it so.
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Bart: 10) What about the my high reflexes? “ You can have high or brisk reflexes if you are nerveous, certain body type. We look for abnormalities in the reflexes.”

Arron: Brisk reflexes are not a bad sign of anything. In some cases it is a good thing, especially in sports & athletics. Take it as an advantage over someone that has the reflexes of a dead slug!

In ALS you LOSE all reflexes. What makes anyone even REMOTELY think that having brisk or accelerated reflexes is a symptom of a disease that DISCONNECTS their muscles from their brains? When you have ALS you LOSE all reflexes, you certainly don't acquire faster, more brisk reflexes! Tjis again is just part of the problem. People read (and believe) stuff told by people that couldn't find their way out of a wet paper bag!
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Bart: 11) I read stories on the internet ( we all know certain stories, not going to tell them here again) “ Well, listen, that’s the internet
* It’s not a controlable source/place
* You don’t know if it’s true or not
* Facts are never given cleary
* I it’s in fact an als patient, it’s mostly a cry for help
* Some say I've been twitching for 10 months and now I get ALS, there would be signs if this person had had a clinical

Arron: Read my previous comment. Just because people say something on the internet doesn't make it true. You have to sort throuh and CONSIDER THE SOURCE where you get your information from! The fact of the matter is, doctors often come HERE to get info on BFS! Ever wonder why? It isn't because we spread false information, that's for sure.
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Bart: 12) Do you ever have patients going from BFS to ALS? “In 40 years – never “

Arron: If I've said this once, I've said it 10,000 times. NO ONE WITH BFS HAS EVER GONE ON TO DEVELOP ALS.... NO ONE! ALS twitches happen for an ENTIRELY different reason than BFS. BFS appears to be a chemical imbalance in the body. ALS is a NERVE DISEASE. Connecting the two because they both have "twitches" (which aren't even the same), is like connecting a sore throat caused by the common cold to throat cancer. They are not even in the same ball park!
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Other things he said-
-At some point you just have to believe this is not ALS, we are specialists trained for recognizing this disease, we don’t not easily miss something.

-If all that has been said over the internet would be true, I would not have a job!

-Twitching is mostly always benign.

Arron: Does any of that sound farmiliar? There are 1,000's and 1,000's of threads on this site saying the exact same things Barts neuro said above. I just wanted to comment and support some of what he said. Quit trying to be the ONE case that disproves everyone. You are not going to be the case. Quit trying to associate "twitches" with ALS. If all you have is twitching, it ain't ALS. If you don't know what the differences are between all of the different kinds of twitches, then I suggest you take the time to sit down and read "BFS In a Nutshell" and some of my other posts to learn why you are scaring yourself over nothing.

I don't want ANY of you going through what I and many others have gone through in the early days. I lost 2 years of my life before this site was up. There was almost no information on BFS when I came around, and when John V started this site. This is why I devoted SO much time into actually studying BFS and ALS qwith about 6 of my doctor friends and becoming the (what I like to call) BFS / ALS expert that I became. I did this to help YOU not make the mistakes I made in my early days of being completely freaked out (over nothing), and I want to help YOU not go through the sheer terror I went through.

I hope this thread helps you too!
Arron
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