My neuro follow up at the ALS clinic

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My neuro follow up at the ALS clinic

Postby christo on February 12th, 2013, 11:10 am

I know this story have already been told, but I will go on anyway, because it will make no harm to repeat this.

Today I had my neuro follow up in an ALS clinic. The neuro was really nice. He asked me from the start if I was an anxious person, and of course I said yessssss :)
He told me that never someone without medical backgound should know about all this scary information and that even some medical workers, including doctors, sometimes could not deal with this. I think everyone here will agree !
Then he did the clinical exam, a very thorough one (more than the first I had 4 month ago), strength, reflexes, tried to trigger fasics about everywhere in my body, look at my tongue. When done, I asked if he was now going to EMG me and he said no, no need to.
Then he took the time to explain me with chosen words that he would not, and woud never tell me than I won't develop ALS in the future, because he can't. He then said that today I have absolutely no signs of ALS. He said than I don't fit the way ALS present, that at this time (6 month since beginning) with widespread fasciculation I should be seriously disabled if I had the disease. He explained me that fasciculation lower than knee is nothing, nothing at all, not even a symptom of something and that he could not care less. He then said that fasciculation upper than knee are something that could be of interrest, but not alone because again, alone it's nothing. I asked him if anxiety could cause widespread fasciculation, and he said yes, definetly. (he is a motor neuron disease specialist working at ALS clinic for 20+ years, so I believe he knows what he is saying). He didn't diagnosed me with BFS since in France it's not a real diagnostic for many neuros, so he just diagnosed me as "healthy".

My life have been in stand by mode for 6 months, I was unable to make project, I was living in anxiety for all this months. This board have been my oxygen and I am so thanksful to it's creators, moderators, and to the great community behind it.
Now it's time for me to take my life back, to turn this page. I will probably stick around, for the nice people here, and to help some newbies who may need some reassurance.

Thanks again to everyone, especially the ones on chatzy.

Christophe
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Re: My neuro follow up at the ALS clinic

Postby Yuliasir on February 12th, 2013, 11:44 am

So good to see that you are coming back to life, Christophe!

(Pity I can not say that properly in French)
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Re: My neuro follow up at the ALS clinic

Postby BFSBurger on February 12th, 2013, 11:47 am

christo wrote:I asked him if anxiety could cause widespread fasciculation, and he said yes, definetly. (he is a motor neuron disease specialist working at ALS clinic for 20+ years, so I believe he knows what he is saying).


This is great to hear. Especially from a long term physician.

Now hopefully you can begin some lifestyle changes which will calm tension on many different levels throughout your body. If it didn't work, so many people here wouldn't be reporting that it does. Don't listen to those who say "Just stop thinking about it, there's nothing you can do". Those people are incorrect. I have proof.

Glad you are well Christo.

BFSB
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: My neuro follow up at the ALS clinic

Postby johnnythejet on February 12th, 2013, 1:24 pm

Great to hear, Christo. Be done with this nonsense and enjoy your life. :)
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Re: My neuro follow up at the ALS clinic

Postby jerry2 on February 12th, 2013, 1:54 pm

christo wrote:He then said that fasciculation upper than knee are something that could be of interrest, but not alone because again, alone it's nothing.


I wish I've had such good neuro that told me this. Anyway, congratulations. I just find it very wierd that neuros find things of interest the things that are not even remotely interested, but scary ;-) I mean, I like to be boring to ALS neuro ;-)))
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Re: My neuro follow up at the ALS clinic

Postby garym on February 12th, 2013, 4:32 pm

Congrats on the report.....goes back to a simple saying that has been used here for years, "it's not the fasciculations, but the company they keep." Meaning in the absence of weakness, fibs, sharps, etc., fasciculations are simply annoying and nothing to worry about. If we could just get ALL new members here to understand this one simple truth, the world would be a better place :D

Take care,
Gary
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Re: My neuro follow up at the ALS clinic

Postby stephane28 on February 13th, 2013, 3:14 am

christo wrote:Then he did the clinical exam, a very thorough one (more than the first I had 4 month ago), strength, reflexes, tried to trigger fasics about everywhere in my body, look at my tongue.


How did he proceed to try to trigger fascics? I mean I can trigger fascics in my thenars when I poke them (especially my left) hard enough and I think many other people here can also, and even healthy people too.

Did he look at your toungue at rest or when you stick it out?
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Re: My neuro follow up at the ALS clinic

Postby christo on February 13th, 2013, 10:17 am

He tried to trigger them with a kind of small hammer, poking at muscle in all limbs. For the tongue, he asked me to stick it out and watch it for something like a minute.
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Re: My neuro follow up at the ALS clinic

Postby jerry2 on February 13th, 2013, 10:23 am

Heh, he would see how my tongue tremors then all over.
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Re: My neuro follow up at the ALS clinic

Postby stephane28 on February 13th, 2013, 11:03 am

jerry2 wrote:Heh, he would see how my tongue tremors then all over.


Yep, mine quivers a lot when stuck out too. It's moving up/down, left/right with some U movements. But I think your neuro was looking for the bag of worm type of movments.
Jerry, do your cheeks tremor also when you blow your mouth with air or when you smile? I have this and I think that it is PNH typical symptom in the bulbar area, as for the chvostek sign (do you have it too ? )

Concerning the trigerring of fasciculations I can do that but I have to beat hard enough. A poke with a neuro hammer won't induceany fascics. I think mine are due to the idiomuscular reflex which is kind of normal on healthy people

Christo I think your neuro is right when he says that normal people shouldn't be aware of so many things on so horrible diseases
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Re: My neuro follow up at the ALS clinic

Postby jerry2 on February 13th, 2013, 11:21 am

stephane28 wrote:
jerry2 wrote:Heh, he would see how my tongue tremors then all over.


Yep, mine quivers a lot when stuck out too. It's moving up/down, left/right with some U movements. But I think your neuro was looking for the bag of worm type of movments.
Jerry, do your cheeks tremor also when you blow your mouth with air or when you smile? I have this and I think that it is PNH typical symptom in the bulbar area, as for the chvostek sign (do you have it too ? )

Concerning the trigerring of fasciculations I can do that but I have to beat hard enough. A poke with a neuro hammer won't induceany fascics. I think mine are due to the idiomuscular reflex which is kind of normal on healthy people

Christo I think your neuro is right when he says that normal people shouldn't be aware of so many things on so horrible diseases


First of all, I believe there were less BFS (the ones that just twitch withought other symptoms) before internet got popular. I also believe there would be 50% less BFS if they found a reversible cure for ALS.

I have hard time to have tongue when I stick it out (not harden it to max, then it is still!) still, it quivers, trembles, tremors from all sides. As I am not a neuro, I can speculate this is not a bag of warm movement twitching, but a regular tremor. I certanly can not distinguish my tongue tremor from the bag of warms tremor - one could say it is like bag of worms, it quivers all over if at half strenght.

But the same happens with my both big toes, when I curl them down half way, my instep is full of quivering and my big toes tremble a little, it is like a bag of worms in instep or small wormy fasciculations. This happens every time for 16 months, so I guess it is not anything bad. It is like when my long muscles are half in action they can not do this calmly but they tremor.

So yes, if I make a rather sad half smile, my cheeks and lips also aren't steady, again seems like tremor to me. If I make a big artificial smile so that I strenghten my muscles to the max, it is steady.

The last wierd thing I got at the hand atrophy site was when I put a little preassure on the thumb the skin between thumb and index was fasciculating or so it seemed and my thumb was trembling. Was hard to read a book. This happened 3 weeks after I had slow warmy movement at that area following the fast twitches, so I had them all at that place that neuro thogught had some atrophy. Now I think I don't have any of this things there.

The chevostek sign like Chrissi has? No, I don't think Ihave this. I have the 2 eyes twitching sign. That means I twitch there every time I see a pretty girl. And unfortunately also when I see an ugly guy ;-) I twitch there allways for 16 months, some month more (like now) some less. I know I will get rid of this sh*t once I can yawn and not have the 10 second eyelid twitch ;-) Not before.
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Re: My neuro follow up at the ALS clinic

Postby christo on February 13th, 2013, 12:36 pm

Stephane :
The neuro count not induce many fasics on me, he did saw one on the legs but not anywhere else. My fasics are more easily induced but using the muscles, are sometimes depending on my position.
Also, the chvostek sign seems to be really indicative of hypocalcemia, which could also cause twitching. Did you had your calcium level checked ?

Jerry :
I also had very easy to trigger eyebrow twitches, both side. I like you could trigger a twitch if I yawn or even just by touching softly my eyebrow. This lasted for 1 full month, maybe more, but it seems to be gone for now.
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Re: My neuro follow up at the ALS clinic

Postby stephane28 on February 13th, 2013, 4:37 pm

Chvostek sign is a sign of hypocalcemia OR (in the case of normal calcium level) PNH. That's what I understand from what I read. Of course you can have PNH without Chvostek sign.
My calcium blood level is in the upper limit and I have this sign quite clearly. But maybe that the calcium at the cell level is too low but this is impossible to measure and maybe that this is the cause of PNH.
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