Old 10-24-2013, 11:52 AM #1 (permalink)
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Default BFS forum post... Very beneficial to those twitchers!

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Back from neuro
by Bart1 on June 4th, 2008, 4:29 pm
Hi everybody,

Got back from the neurologist. First things first. His words, and the most important ones: this is NO ALS.

(I’m going to try to give as much information as he told me but I’m Dutch so hopefully my english is good enough)

The neurologist has been a professor in motor neuron diseases for more than 40 years, so he must know what he’s talking about. He looks a little like Santa Claus, so he must be very good and smart.
Usually an assistant neurologist does the clinical but this time I saw the professor right away. He didn’t see the use of doing another clinical because I had already been diagnosed with BFS.

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.”

I explained my fear for bulbar als so he did a clinical in my mouth, tongue and neck. All fine he said. Of course I asked him about tongue fasciculations. He said that’s not the kind he’s looking for. With ALS they look at something else in the tongue, he explained me what they look for. (not going to explain that because otherwise you all end up in front of the mirror and you don’t have als so no reason to explain it). He said the tongue is the most active muscle and the one that’s almost impossible to keep still. So regarding to shaking tongues: no worry = natural.

I also showed him my arm because I thougt there was atrophy. He laughed. “This is no atrophy at all”

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.”

3) Widespread twitches and bulbar diagnosed: “Here you need to use your common sense, if you are twitching all over and it’s due to ALS than 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”

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”

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”
6) Do you see clinical abnormalities in every clinical in every stage of ALS? “Yes”

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.

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. With ALS it’s different. The muscle doens’t get impulses of the nerve anymore or badly and shouts outs to the other muscles to reinforce. So they give a little of their strength to it, result: continous twitching, fibs, sharp waves,…

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.

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.”

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

12) Do you ever have patients going from BFS to ALS? “In 40 years – never “

13) Is ALS really that rare? 1/100 0000 What about young people? Well there are indeed cases of young people, but rare. The only connection we might see with young als patients is that they, in many cases, are very intensive sportspeople. We think that they would get ALS eventually but that they have accelerated it. But I mean real sportspeople not going to the gym or have a run, sport is good for you”

14) Do you see a lot of people with BFS? “Every week, listen, go on the street and ask 100 people if they have twitches, I wouldn’t like to feed them. Most people don’t even know they have them, some just feel something but think, okay that’s part of my body. Most people we see here with BFS are medical people who link this to ALS and of course the ‘googlers’(that's us ).


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. As a matter of fact we have 600 ALS patients followed up here.

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

-I can give you a book about neurology, if you read it, I’m certain that you will be here next week again thinking you got 1000 diseases.

-Twitching is mostly always benign.

-I’m concerned about this. I know you can become 100 years with this BFS but I’m afraid for the mental part. You have and try the quit your anxiety, the brain is so powerful.

His advices

- Stop searching the internet, you will always find the things you don’t want to know or aren't true

- Stop exhausting your body: stop running every stair, pick up everything, lift weights all the time. If you just go to the gym to work on your body and health it’s ok, but if this als fear is in the back of your mind during excersise you will exhaust your body even more and twitching will increase. Because you are doing things that you are not used too + your mind is being involved. Result: more twitching, more pain, more cramping,… If you would have ALS you would notice it in the little things like turning keys, grabbing things, getting up from a chair.

- If you worry about the twitches go to your GP get a note for the neurologist . Let them do a clinical. If you are ok trust him/her. Still not convinced, get a second opinion, but after that: stop! Life and enjoy.

- We cannot say never ever, so as I can’t say that you won’t mutate in an alien in 5 minutes either.

- With 99.9% we don’t mean that there is actually 0,1% that will get something, no this is wrongfully understood. Like I mentioned before, we have no garuantees in life, for nothing, that’s way 99,9%. We can’t give you a 100% that you won’t drop dead in 10 minutes. That’s all.

- Trust your neurologist, he’s the one that studied for this, he’s the one following ALS patients, we are not, you don’t know what we look for. Don't diagnosed yourself.

- For diagnosed ALS we don’t look for twitches but for weakness and atrophy, real weakness that doesn’t stop but only get worse.

- I know, he said, this twitching and all the things are bothering you but the only way to reduce them is REALLY accept it that there is nothing wrong with you, as long as you have the slightest doubt about it your mind will maintain this symptoms are even make them bigger.

Maybe there was more information but most things have been said here hundres of times. I’m now going to try and beat this fear and leave it behind me. I’m going to try not to visit the forum as often, but everyone can always PM me.

There is just one last thing to say: I want to thank everybody that supported me, people that PM 'ed me, that prayed for me, that listened too me. Thank you Deedee, Sandra, Sean, Mark, Denise, CDC, DD, Slavin Balen, Swedish Girl, Edado, Cindy, Wamjr1002 and many more. You are good people, love you all and God bless you.
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