Mamede de Carvalho

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Mamede de Carvalho

Postby Noturnus on January 24th, 2012, 2:04 pm

I am 2 years and 2 months on this mess. I have the fasciculations and a aching on my arm muscles that drives me crazy. Some weeks ago I woke up in fear of having ALS because of my lack of fasciculations on my calves and the severe aching I feel on my arm muscles. Got the doctor Mamede from one of his articles (he has various) and sent him a email hoping he would respond.
He is a very kindly person as he did not ignore my email and responded it on the same day I sent.
He said he has various patients with the same and and clinical picture I have and he is following another patients by email and none of them developed motor neuron disease.
He is one of the most active ALS researchers on the world. He have tons of articles about motor neuron disease and he actually believes there is a syndrome of benign fasciculations.
I think I had to share this with you.
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Re: Mamede de Carvalho

Postby garym on January 25th, 2012, 10:29 pm

Noturnus wrote: he actually believes there is a syndrome of benign fasciculations.



whew, now that is a relief..... :D
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Re: Mamede de Carvalho

Postby Ghayes420 on January 26th, 2012, 12:54 pm

garym wrote:
Noturnus wrote: he actually believes there is a syndrome of benign fasciculations.



whew, now that is a relief..... :D


Gary, you said it brother! :D
A very proud fasciculator since 8/14/2011. :)
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Re: Mamede de Carvalho

Postby TwitchyDoc on January 27th, 2012, 3:17 am

Garym, I see Noturnus' point as some neurologists do not really believe in BFS (like that **** from the Walton).
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Re: Mamede de Carvalho

Postby chrissi on January 27th, 2012, 3:28 am

I guess it is really a question of the name you give it. Many docs apparently never heard of BFS, but are more familiar with expressions like peripheral nerve hyperexcitability or neural hyperexcitability syndrome or even under spasmophilia you find "BFS" symptoms.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: Mamede de Carvalho

Postby wjjw on January 27th, 2012, 10:27 am

TwitchyDoc wrote:Garym, I see Noturnus' point as some neurologists do not really believe in BFS (like that **** from the Walton).

There were numerous posts by people on this site who were told by their neurologists that they themselves (the neurologist) had or has BFS. This is a fact. If you are referring to the same Walton paper that I am, the authors did not say they didn't "believe in BFS," they said that such a diagnosis could not be considered "secured" without a minimum follow up time. It is also a fact that this paper is NOT in any way an indicator of the implications of twitching, or a statistical analysis by which you could even gauge your degree of worry. Even if you wanted to do that! All it is is a description of a handful of white crows out of a large sea of black crows.

The best level headed analysis of this paper was given in a long thread on an ALS forum. It included senior forum members who were diagnosed with ALS who I'm sure, judging from their post count, have read tens of thousands of posts and real stories of people diagnosed with ALS. They viewed it, as I do, as something that should not cause people with BFS any undue anxiety. One even referred to a twitching poster as a "fearmonger" (his words) for his interpretation of this handful of medical rarities.

If you really like to look for white crows, and want to spend time doing Internet research, why not look for the really interesting ones:

http://whitecrows.davidsmuse.co.uk

At least it will keep you away from the ones that don't pertain to you, and direct you towards those that almost certainly do. :wink:

Cheers,
Bill
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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