Emails from Profs Carvalho and Eisen

Post your questions about BFS here

Moderators: JohnV, Arron, garym

Re: Emails from Profs Carvalho and Eisen

Postby Little Lost on March 18th, 2014, 7:51 am

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
Little Lost
Selfless giver of time
Selfless giver of time
 
Posts: 177
Joined: July 3rd, 2013, 7:17 am

Re: Emails from Profs Carvalho and Eisen

Postby garym on March 18th, 2014, 9:13 am

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 :)
garym
Moderator
Moderator
 
Posts: 1889
Joined: August 23rd, 2003, 1:24 pm
Location: Texas

Re: Emails from Profs Carvalho and Eisen

Postby Little Lost on March 22nd, 2014, 7:41 am

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
Little Lost
Selfless giver of time
Selfless giver of time
 
Posts: 177
Joined: July 3rd, 2013, 7:17 am

Re: Emails from Profs Carvalho and Eisen

Postby LKP1231 on September 30th, 2014, 8:36 pm

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
LKP1231
Hero
Hero
 
Posts: 424
Joined: September 4th, 2014, 1:52 pm

Re: Emails from Profs Carvalho and Eisen

Postby LKP1231 on September 30th, 2014, 8:36 pm

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
LKP1231
Hero
Hero
 
Posts: 424
Joined: September 4th, 2014, 1:52 pm

Re: Emails from Profs Carvalho and Eisen

Postby RGB on October 2nd, 2014, 12:33 pm

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
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
RGB
Selfless giver of time
Selfless giver of time
 
Posts: 238
Joined: February 6th, 2013, 1:07 pm

Re: Emails from Profs Carvalho and Eisen

Sponsor

Sponsor
 

Previous

Return to Questions About BFS

Who is online

Users browsing this forum: No registered users and 12 guests