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Re: Emails from Profs Carvalho and Eisen

PostPosted: March 18th, 2014, 7:51 am
by Little Lost
Hi

Just adding a link to the forum topic that a lot of us took part in recently ( someone asked me where it was ). It means that in the future people who still have questions about twitching before or after weakness, or about bulbar vs limb EMG etc can be directed to. i.e. when I was new I would read that things had been debated to death, but often it didnt say exactly where these debates were (which meant a long trawl through all the old posts).

So this link contains multiple and diverse views on the new/old studies and what they meant, and what they didn't mean. It contains opinions from all different sides of the debate, and is quite balanced.

For anyone interested we talk more indepth about the research paper mentioned in this thread. Why it is important and why it is not important. The above articles are mentioned in page 6 of this link but the whole topic is good for those concerned about all the contradicting info across all the various sites as well as here. In it we talk about the science, how it is interpreted, how newbies feel, how old timers feel, and how it all fits into the real life experience of BFS on this board.

viewtopic.php?f=4&t=20232

Hx

Re: Emails from Profs Carvalho and Eisen

PostPosted: March 18th, 2014, 9:13 am
by garym
Good idea Helen to link these two posts....just spent the last 15 minutes reading back through that one, and it was informative. I for one feel lucky to have you as a member....wish you didn't fasciculate, and didn't need to be here, but I'm glad you are just the same :)

Re: Emails from Profs Carvalho and Eisen

PostPosted: March 22nd, 2014, 7:41 am
by Little Lost
Thanks for your kind words.....I am good at sending people to sleep on this forum. I am sure the "constant excessive yawning topic" gains momentum after I post, and the boredom scale goes through the roof........... and then along come TWITCHYDOC and can wake you all up again. ( Honest TD no pun intended I actually like your posts and considering English is not your first language it is incredible how you can translate so well).

Hx

Re: Emails from Profs Carvalho and Eisen

PostPosted: September 30th, 2014, 8:36 pm
by LKP1231
Not sure anyone will see this as this is an older post, but the first doctor saying *** presents with widespread fascics wasn't very comforting as so many if us start that way

Re: Emails from Profs Carvalho and Eisen

PostPosted: September 30th, 2014, 8:36 pm
by LKP1231
Not sure anyone will see this as this is an older post, but the first doctor saying *** presents with widespread fascics wasn't very comforting as so many if us start that way

Re: Emails from Profs Carvalho and Eisen

PostPosted: October 2nd, 2014, 12:33 pm
by RGB
Hopefully LKP1231 will read this but even if not then it is worth stressing to ease other people's anxieties...

Whilst one expert suggests that widespread fasciculations are more common in ALS then the other says they are likely to be more focal. What this tells us, and more so once you add in the uncertainty over the way in which the word 'widespread' is being used (body v muscle), that distribution doesn't seem to be a good indicator.

Note also that even if ALS was to present with widespread twitches then this is a million miles from saying that widespread twitching in the absence of weakness, abnormal reflexes etc is any more sinister than focal twitching (or vice versa). Anxious minds can often fail to make that distinction.

or if that is all a bit "tl;dr" then : All the science points to the fact that in the absence of other neurological signs, widespread twitches are just widespread twitches.

RGB