Hyperexcitability phase

BFS Online Support Group

Moderators: JohnV, Arron, garym

Hyperexcitability phase

Postby joycecaroll on January 9th, 2015, 11:17 am

This phase that somebody told me about is the only thing still keeping me in doubts. Does it really exist with ALS? What is it, how would it manifest?

So many bfsers seems to not care one bit about this theory, and I'm really feeling ready to give up this fear my self. So, what are your thoughts?

Kindly,
Tongue twitcher of four months
joycecaroll
Selfless giver of time
Selfless giver of time
 
Posts: 147
Joined: May 16th, 2014, 11:53 am

Re: Hyperexcitability phase

Postby TwitchyDoc on January 9th, 2015, 11:47 am

joycecaroll wrote:So many bfsers seems to not care one bit about this theory, and I'm really feeling ready to give up this fear my self. So, what are your thoughts?


Read the paper about PNH a posted here earlier. It explains the phenomenon quite well, so calling it a theory is a bit misguiding. It is a like a fever or a headache - it is a symptom.
As for why we do not care - because there is no point in that, it does not change anything.
TwitchyDoc
Saint
Saint
 
Posts: 1169
Joined: August 7th, 2010, 7:30 am

Re: Hyperexcitability phase

Postby joycecaroll on January 9th, 2015, 12:04 pm

TwitchyDoc wrote:
joycecaroll wrote:So many bfsers seems to not care one bit about this theory, and I'm really feeling ready to give up this fear my self. So, what are your thoughts?


Read the paper about PNH a posted here earlier. It explains the phenomenon quite well, so calling it a theory is a bit misguiding. It is a like a fever or a headache - it is a symptom.
As for why we do not care - because there is no point in that, it does not change anything.


Where can I find that paper?

Is it not a theory that this phase could preceed weakness as a presenting symtom? As I understand it the hyperexcitability phase has only been studied in advanced stages of ALS, not pre diagnosis?

It changes a lot for me, since you said this phase might take several months and only include a few twitches. Since I've had a few tongue twitches every day since September the idea of an hyperexcitability phase with no weakness is the whole root to my anxiety.
joycecaroll
Selfless giver of time
Selfless giver of time
 
Posts: 147
Joined: May 16th, 2014, 11:53 am

Re: Hyperexcitability phase

Postby TwitchyDoc on January 9th, 2015, 3:06 pm

It is in the other thread you created about this subject. I posted the link a few weeks ago. It sums up all the facts quite well.
TwitchyDoc
Saint
Saint
 
Posts: 1169
Joined: August 7th, 2010, 7:30 am

Re: Hyperexcitability phase

Postby joycecaroll on January 9th, 2015, 3:56 pm

I would really love if you could explain what this phase means. You're the one who told me about it, and it gives me doubts and panic everyday. You won't answer PM's and nobody else thinks this information is relevant. Nobody can explain to me what it means.

The way I understand it my clean EMG and couple of daily twitches in tongue could mean ALS since this could all be the hyperexcitability phase? I've tried asking how this phase would manifest. I've asked if there would be a lot of fasciculations, if there would be clinical signs, EMG abnormalites etc. You just answer that nobody knows, and this sent my in the spiral of anxiety that has been my life since september. Since you won't answer, I've tried askng other people and they all say this phase is bs and that they've never heard about it. One person knew quite a bit about it and was confident about this:
1. It has only been studied in advanced stages of ALS, never pre diagnosis
2. EMG recorded muliple complexed fasciculations
3. This phase would produce a significant amount of fasciculations

So, as far as I know you're the only one who claims this phase could manifest with totally clean EMG and two twitches a day. Now, IF this is true, than so be it. All I ask is that you take responsibility for spreading that information. By that I mean I would like you to be open for questions. You're on a board filled with anxious people, so suggesting this idea about a hyperexcitability phase will create questions.

You have medical training and a totally different perspective on this, as well as better opportunities of understanding this subject. I can't find anyone else who recognize this phase as relevant except you, not saying there isn't anybody. My point is, you gave me this information. I don't understand how to deal with it, it creates a lot of anxiety, and I would love for you to be open to questions.
joycecaroll
Selfless giver of time
Selfless giver of time
 
Posts: 147
Joined: May 16th, 2014, 11:53 am

Re: Hyperexcitability phase

Postby Ghayes420 on January 9th, 2015, 4:25 pm

Instead of having someone on this board try and translate what this 'hyperexcitability phase' is all about, you could simply google the huge study on it that was published in the spring of 2013. It is available online, all 52 pages of it. If you wanted to read what it says, I suppose you could find the study and read all about it.

OR (big OR) you could trust your neurologist or medical professional and their opinion of your condition.

As a chronic doubter I have read every article and research paper you can image along with talking to the six of the most prominent ALS experts in our country. I can tell you that my anxiety would be in a much better place if I did not do any digging and reading on my own and JUST listened to the experts. So that is just fair warning to you.

I am a believer that knowledge and truth are power but in the case of BFS, ignorance is bliss is the best way to go, IMO.
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: Hyperexcitability phase

Postby joycecaroll on January 9th, 2015, 4:32 pm

Ghayes420 wrote:Instead of having someone on this board try and translate what this 'hyperexcitability phase' is all about, you could simply google the huge study on it that was published in the spring of 2013. It is available online, all 52 pages of it. If you wanted to read what it says, I suppose you could find the study and read all about it.

OR (big OR) you could trust your neurologist or medical professional and their opinion of your condition.

As a chronic doubter I have read every article and research paper you can image along with talking to the six of the most prominent ALS experts in our country. I can tell you that my anxiety would be in a much better place if I did not do any digging and reading on my own and JUST listened to the experts. So that is just fair warning to you.

I am a believer that knowledge and truth are power but in the case of BFS, ignorance is bliss is the best way to go, IMO.


I do want to trust my neuro. He does not believe there is a hyperexcitability phase with ALS. But TwitchyDoc keeps arguing that there is, but says there are no more information than that. So I'm left here not knowing what to believe.
joycecaroll
Selfless giver of time
Selfless giver of time
 
Posts: 147
Joined: May 16th, 2014, 11:53 am

Re: Hyperexcitability phase

Postby Ghayes420 on January 9th, 2015, 4:45 pm

Maybe best then to just believe your neuro and not read any research papers then? Problem solved.

I believe your neuro told you that you don't have anything bad going on. Its best to believe him and go from there. If you research hard enough you could easily convince yourself otherwise because you are using what is referred to as a 'cognitive filter' when you read anything. You will only focus on the parts that you feel apply directly to you and you will not be able to objectively evaluate. Guilty of that here in the beginning. I wish I never read anything.

I am sorry if this comes off as 'know it all' sounding, that's not my intent at all, but you sound exactly like me at the 4 month mark. I wanted to know everything. Huge mistake.
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: Hyperexcitability phase

Postby joycecaroll on January 9th, 2015, 5:00 pm

Ghayes420 wrote:Maybe best then to just believe your neuro and not read any research papers then? Problem solved.

Look, I get that you mean well, but you understand it's not that simple. I have really bad anxiety, please treat that respectfully. Of course I wish I never knew any of this. I wish I never asked any questions because obviously it has not helped me in any way.

But here I am. These guys on Internet keeps talking about a phase that basically makes it possible for me to have ALS. I have tons of questions, but nobody can answer. My neuro doesn't even know what I'm talking about.

I have anxiety and OCD. That's my problem and my responsibility. But everybody here has anxiety, and I really feel that there's a point to being careful about what kind of information is being posted here. What's the point of telling someone with severe anxiety about a hyperexcitability phase and not knowing how it would manifest or how long it can last? And on top of that getting surprised or frustrated about how I'm not being able to let this go?
joycecaroll
Selfless giver of time
Selfless giver of time
 
Posts: 147
Joined: May 16th, 2014, 11:53 am

Re: Hyperexcitability phase

Postby Ghayes420 on January 9th, 2015, 5:15 pm

Please know I am trying to help you here, that's the reason I stick around.

I too have extremely bad health anxiety and OCD as well, which is why I can identify with you and what you are going through EXACTLY.

I understand your frustration with conflicting information. And I am sorry that it was presented to you in the manner in which is was. That was not done properly and without regard for your mental well being in any way. Basically *beep* poor bedside manner.

Again, if you want to read the paper, it is easily available online. I don't feel it will benefit anyone here because we all have BFS here, not ALS, therefore research papers on ALS and its presenting symptoms are not needed here in any way.
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: Hyperexcitability phase

Postby joycecaroll on January 10th, 2015, 10:23 am

Is there anybody else with experince or thoughts on this phase? Anybody who talked it over with their neuro for example?
joycecaroll
Selfless giver of time
Selfless giver of time
 
Posts: 147
Joined: May 16th, 2014, 11:53 am

Re: Hyperexcitability phase

Postby leaflea on January 10th, 2015, 3:43 pm

joyceroll -- I am not sure about what you are referring to but is it that paper of Eisens? And another author? LittleLost gave good explanation of it and also emailed directly with the authors. They have written textbooks and say 6-7% have hyperexcitability phase first, but may have normal EMG. However, BIG HOWEVER, those people would not likely have perfectly clean clinical exam. And, they have never seen a patient in this phase longer than six months before EMG would show something bad - 8 months max...Is that the one?
Matthew 6:27 Who of you by worrying can add a single hour to his life?
User avatar
leaflea
Saint
Saint
 
Posts: 523
Joined: November 12th, 2013, 2:06 pm
Location: Minneapolis, MN

Re: Hyperexcitability phase

Postby Ghayes420 on January 10th, 2015, 3:56 pm

Hi Leanne, the study referred to is newer but similar in theory. It was published in Spring 2013.
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: Hyperexcitability phase

Postby leaflea on January 10th, 2015, 3:58 pm

I don't think I want to know about that one. I want to talk about the one published in Spring of 2014 but no one will come out to play on that one :-)
Matthew 6:27 Who of you by worrying can add a single hour to his life?
User avatar
leaflea
Saint
Saint
 
Posts: 523
Joined: November 12th, 2013, 2:06 pm
Location: Minneapolis, MN

Re: Hyperexcitability phase

Postby joycecaroll on January 10th, 2015, 4:03 pm

leaflea wrote:joyceroll -- I am not sure about what you are referring to but is it that paper of Eisens? And another author? LittleLost gave good explanation of it and also emailed directly with the authors. They have written textbooks and say 6-7% have hyperexcitability phase first, but may have normal EMG. However, BIG HOWEVER, those people would not likely have perfectly clean clinical exam. And, they have never seen a patient in this phase longer than six months before EMG would show something bad - 8 months max...Is that the one?


Do they say what charecterize this phase? Just a lot of fasciculations?
joycecaroll
Selfless giver of time
Selfless giver of time
 
Posts: 147
Joined: May 16th, 2014, 11:53 am

Re: Hyperexcitability phase

Sponsor

Sponsor
 

Next

Return to The Support Group

Who is online

Users browsing this forum: Google [Bot], Google Adsense [Bot] and 4 guests