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Re: Calling on TwitchyDoc -- Tongue Fascics

PostPosted: September 21st, 2013, 5:07 am
by Englishtwitcher
Eek this is my worst fear - that it is possible to have twitches before the start of ALS. I also have cramps :(

I'm still not sure i don't have it. How long is long?

Re: Calling on TwitchyDoc -- Tongue Fascics

PostPosted: September 21st, 2013, 6:23 am
by Yuliasir
my dear, I have cramps too for many years already. they can be better with Mg and can be not... light cramps which improve by themselves or with easy motion are only again due to hyperexcitability of muscles and bad blood circulation.
As far as I understand ALS cramps are due to destructive process in upper motor neurons and therefore loss of complex antagonisic action of muscles causing them normally feel as relaxed, therefore they started to have tonic cramps -long lasting, painful and persistent (not relieved by movement).

TwitchyDoc actually wrote recently about a person who had 2 years between early symptoms and true full size ALS onset because of extreme renervtion ability. But
1) preceding twitches are rare in ALS and people who come and seek medical help becasue of twitches and then develop ALS usually constitute about 10 or less percent of all ALS victims. NORMALLY in ALS twitches are already come in good company with weakness, not before.
2) even if they precede, there are usually some other strange issues like change in reflexes or clinical tests, which lead to EMG, on EMG usually suspicious findings could be seen in that case and then normal followup is 3-6 month, average 4.

if your neuro specialist on MND told you that your twitches are benign, they most probably ARE benign because they lack some accompanying features.

Neuros are usually well aware of our syndrome, however not always they call it BFS. They often say: it is anxiety syndrome, and they are mostly right.