Bulbar onset

BFS Online Support Group

Moderators: JohnV, Arron, garym

Re: Bulbar onset

Postby joycecaroll on December 14th, 2014, 5:43 am

TwitchyDoc wrote:Without a video, it is way too subjective. They are fast, brief and multifocal.


I'm sorry, they come and go so fast. It's impossible for me to catch them on video.

Mine come in singles and sometimes in different spots with many hours between each twitch.

What so you mean by multifocal? Would they be multifocal and more frequent in the hyperexcitable phase? Even if there are no studies on frequency, what is your opinion as a neurologist?
joycecaroll
Selfless giver of time
Selfless giver of time
 
Posts: 147
Joined: May 16th, 2014, 11:53 am

Re: Bulbar onset

Postby TwitchyDoc on December 14th, 2014, 5:50 am

You still speak about the hyperexcitable phase with relation to mnd. But the pathology is the same as with idiopathic hyperexcitability syndromes. It is the same thing just the cause is different and as you know this phase has proved to be quite short in mnd, months or rather weeks.
TwitchyDoc
Saint
Saint
 
Posts: 1169
Joined: August 7th, 2010, 7:30 am

Re: Bulbar onset

Postby joycecaroll on December 14th, 2014, 6:01 am

Okay. But do you have any thoughts regarding my questions?

What does multifocal mean?
Would you expect fasciculations to be more frequent than just 5 a day after two months if it was ALS? (I realize there might have been no studies dobe on this, I'm asking for yout opinion).
joycecaroll
Selfless giver of time
Selfless giver of time
 
Posts: 147
Joined: May 16th, 2014, 11:53 am

Re: Bulbar onset

Postby TwitchyDoc on December 14th, 2014, 6:02 am

Tongue as well as thenar muscles can be quite simply checked for hyperexcitability - stick it out slightly so it is relaxed and flick the edges with your fingers strongly. Any subsequent twitching?
Multifocal means its diffuse in multiple places.
TwitchyDoc
Saint
Saint
 
Posts: 1169
Joined: August 7th, 2010, 7:30 am

Re: Bulbar onset

Postby joycecaroll on December 14th, 2014, 6:06 am

Okay I'll try that. But np thoughts on frequency? Soneone told me fasciculations eould be expected to bee very frequent in ALS - once they start they would not stop for several hours everyday.
joycecaroll
Selfless giver of time
Selfless giver of time
 
Posts: 147
Joined: May 16th, 2014, 11:53 am

Re: Bulbar onset

Postby TwitchyDoc on December 14th, 2014, 6:10 am

There is no rule. In denervation, they would not go away. But hyperexcitability is a different thing so the freqency can vary. I would not really worry about single twtches like you desvribe.
TwitchyDoc
Saint
Saint
 
Posts: 1169
Joined: August 7th, 2010, 7:30 am

Re: Bulbar onset

Postby joycecaroll on December 14th, 2014, 6:19 am

F*ck. That worries me so much. Isn't there anything good you can tell me? Like shouldn't the fasciculations at least last longer? Like be there a few minutes anyway, before they go away?
joycecaroll
Selfless giver of time
Selfless giver of time
 
Posts: 147
Joined: May 16th, 2014, 11:53 am

Re: Bulbar onset

Postby joycecaroll on December 14th, 2014, 6:20 am

I'm really in panic.
joycecaroll
Selfless giver of time
Selfless giver of time
 
Posts: 147
Joined: May 16th, 2014, 11:53 am

Re: Bulbar onset

Postby TwitchyDoc on December 14th, 2014, 6:22 am

I already told you that I would not worry about the twitches you describe. We are NOT talking about mnd! In the hyperexcitability, the point is in randomfiring with no predictable pattern. With mnd, they would be more or less still present.
TwitchyDoc
Saint
Saint
 
Posts: 1169
Joined: August 7th, 2010, 7:30 am

Re: Bulbar onset

Postby joycecaroll on December 14th, 2014, 6:28 am

TwitchyDoc wrote: With mnd, they would be more or less still present.

Evenin the hyperexcitable phase?
joycecaroll
Selfless giver of time
Selfless giver of time
 
Posts: 147
Joined: May 16th, 2014, 11:53 am

Re: Bulbar onset

Postby Ghayes420 on December 14th, 2014, 9:10 am

Joyce carol. Please relax. I concur with tdoc. Just as I sent you in PM. What you have is normal for this group. Please try and relax.
A very proud fasciculator since 8/14/2011. :)
User avatar
Ghayes420
Hero
Hero
 
Posts: 464
Joined: August 29th, 2011, 9:00 pm
Location: Nor Cal

Re: Bulbar onset

Postby joycecaroll on December 14th, 2014, 9:14 am

I just want to know that tvere eould be more fasciculations than just five a day in the hyperexcitable phase. Even if there is no rule, I woukd like to know that it's more likely for it to be more persistent.
joycecaroll
Selfless giver of time
Selfless giver of time
 
Posts: 147
Joined: May 16th, 2014, 11:53 am

Re: Bulbar onset

Postby TwitchyDoc on December 14th, 2014, 9:40 am

Joyce, we do not know that.... you act as if we know and do not want to tell you. I wish I could help but hey, it is only logical to think that the less you have them, the better.
TwitchyDoc
Saint
Saint
 
Posts: 1169
Joined: August 7th, 2010, 7:30 am

Re: Bulbar onset

Postby joycecaroll on December 14th, 2014, 10:10 am

I thought you would have an idea of what to expect in the hyperexcitable phase. It would help to know that in most cases it's a continuous twitch.
joycecaroll
Selfless giver of time
Selfless giver of time
 
Posts: 147
Joined: May 16th, 2014, 11:53 am

Re: Bulbar onset

Postby joycecaroll on December 14th, 2014, 10:12 am

Also: if I can't produce twitches by hitting tongue with fingers, does that mean no hyperexcitability?
joycecaroll
Selfless giver of time
Selfless giver of time
 
Posts: 147
Joined: May 16th, 2014, 11:53 am

Re: Bulbar onset

Sponsor

Sponsor
 

PreviousNext

Return to The Support Group

Who is online

Users browsing this forum: No registered users and 6 guests