I come here to feel better, not scared

General Topics

Moderators: JohnV, Arron, garym

I come here to feel better, not scared

Postby speg on June 16th, 2004, 9:27 am

Ok, folks. What I have to say might not make me popular, but I feel I gotta say it. I came here because I believe I have benign twitching and wanted to meet others and talk about it. I did NOT come here to discuss ALS in depth, dwell endlessly on rare cases of ALS that present with non-classic symptoms, or begin to doubt my doctors or test results.

I have stopped reading most posts because I have learned more about ALS than I ever cared to know just from this site. Yes, I have health anxiety and I do need to avoid TMI, but from what I can tell, I am not the only one here who is "sensitive."

This morning I got a private message from somewho who revealed to me they have a friend who died of ALS and his first symptoms were twitching. I didn't ask for this information and I didn't need to read it. Call me a big baby.

As a matter of fact, there is so much talk about this very small subset of ALSers, I am beginning to wonder. Does anyone with ALS present with extreme weakness cause I never seem to hear about these people!

It would be nice if people could warn others in their subject titles about sensitive information, but I can't expect people to cater to me.

I just think focusing on the highly unlikely and/or negative aspects of this syndrome (which I personally believe is more common than we think) is not productive.

Thanks for letting me vent.

Peg
speg
Hero
Hero
 
Posts: 453
Joined: May 2nd, 2004, 4:26 pm

Re: I come here to feel better, not scared

Postby Pole on June 16th, 2004, 9:58 am

speg wrote:This morning I got a private message from somewho who revealed to me they have a friend who died of ALS and his first symptoms were twitching. I didn't ask for this information and I didn't need to read it.


Was it someone registred here?????
M.
User avatar
Pole
Hero
Hero
 
Posts: 472
Joined: June 12th, 2003, 12:56 am
Location: Warsaw, Poland

Postby speg on June 16th, 2004, 10:03 am

Yes, someone new.

I am sure she meant well and was just sharing her concerns.

I had to stop reading the message. I do not need to know the specifics.

peg
speg
Hero
Hero
 
Posts: 453
Joined: May 2nd, 2004, 4:26 pm

Postby jcavan4125 on June 16th, 2004, 12:38 pm

I couldn't agree with you more speg!
After 18 months of twitching (and normal exams and tests), I am no longer worried that I have anything other than BFS; but I (as well as others on this board) remain active simply to help ensure that the information being presented here remains factual. Like yourself, I don't care to hear about the rare anecdotal stories that someone found on another board.
It might be helpful if we were to establish some rules of ettiquitte for the board. I don't know how we would do that, and I'm not talking censorship, but simple courtesy would go along way. It seems intuitive that you wouldn't private message someone with disturbing information that they didn't ask for. I would also love to see folks to keep anecdotal information to a bare minimum especially the kind that only invokes fear and anxiety. If it isn't verifiable medical information then how about keep it to yourself or bring to a board where that sort of thing is appreciated.
That's my opinon anyway!
Joe... "That which does not kill us makes us stronger"! - Nietzsche
jcavan4125
Selfless giver of time
Selfless giver of time
 
Posts: 234
Joined: May 5th, 2003, 12:17 pm
Location: South Carolina

Postby garym on June 16th, 2004, 12:53 pm

I agree with Joe. This a website dedicated to BFS. If a member wants to talk about other topics, they should pick a different BB. I'm not saying that people shouldn't express their concerns about als, but if they are convinced they have it, they should find another site. I would say that nearly everyone here has had fears of als and we all need support dealing with that issue. But don't bring pure conjecture and hear say to this board. Let's stick to facts.

Gary
garym
Moderator
Moderator
 
Posts: 1888
Joined: August 23rd, 2003, 1:24 pm
Location: Texas

Postby Johnny on June 16th, 2004, 1:58 pm

Speg,

Hold on a second. You post about not coming here anymore because of the scary stuff you read here. Yet in your post, you mention someone who died from ALS whose first symptom was twitching. And you didn't even give us the whole story. So now twitchers like me are left to wonder how we might be similar to this person etc. So what good did your post do?

The fact of the matter is - most who twitch do or did at some time worry about ALS.
Johnny
Hero
Hero
 
Posts: 386
Joined: May 9th, 2004, 9:17 pm

Postby Greata on June 16th, 2004, 4:49 pm

Well I have a friend {43} who did not experience any twitching until long after the weakness presented. He could not lift his kid and he could not get up water skiing. Every EMG he had was weird from the beginning and then the fascics. began. He is 15 months diagnosed and still ok..good medicine and slow progression. He is a familial PALS, as his dad died of such.
Just trying to present the other {factual }side.
1.Significant weakness before twitching.
2.Abnormal EMG's from the beginning.

As scared as we have all been at times, such recent posts by TDBM and now Speg just feed our fires. Please respect our fears and concerns. Trust me first hand, through observation not experience, the reality of ALS is some kind of nasty.
Greata
Greata
Senior Member
Senior Member
 
Posts: 54
Joined: September 19th, 2003, 9:16 am
Location: Oregon

This BB is running hot!

Postby Bradford on June 16th, 2004, 7:07 pm

Peg,

Your points are well taken, but receiving e-mails from friends and then turning around and posting about them is exactly the stuff you complain of.

I don't think we can ever separate ALS and BFS because of the process one goes through with their doctors and the tests to verify the condition.

There's got to be some middle ground where information about ALS is appropriately shared, compared and accepted. Over the last couple of days, the type of information that has been given is entirely inappropriate.

Many thanks should go out to jcavan for balancing the inappropriate information with that which was entirely appropriate in his posting.

And lastly, I would hate to come to this site if all we read was a daily report of everyone's daily twtiching and cramping count. However, when its coupled with observations about what increased the symptoms be it exercise, medications, diet then the daily twitching and cramping count is more tolerable.

Best of Health
Bradford
Selfless giver of time
Selfless giver of time
 
Posts: 109
Joined: April 19th, 2004, 3:30 pm

Postby amy_twitch on June 16th, 2004, 7:34 pm

Hi Peg,
I totally agree with you. Comfort is the ideal here---not forcing ourselves to keep second guessing our docs.

I had the EMG NCV tests done by a really funny neuro. I walked in, and I told him "I've been told I have benign fasics, but I'm having a really hard time believing it". He smiled and said, "It makes me really happy that people like you come in here because otherwise I'd have very little business". He also said he sees a lot of us....and a the majority of us are women.

If you think about it, what he says is true....motor neuron diseases are NOT very common---in fact they're quite rare (all of them).

He made it very clear that BFS exists and that he sees it often---and not to worry. Easier said than done....which is exactly why I think this board is terrific....and agree with you that we should focus on comforting each other and helping each other remember this is 'benign' with each new twitch symptom. I like seeing so many symptom onset similarities in our posts. It makes me feel worlds better. I just wish we could figure out what causes this thing. Best wishes to you---you get comfort from this board...and you bring it here too!
Amy
amy_twitch
Hero
Hero
 
Posts: 414
Joined: June 13th, 2004, 8:52 pm

Postby speg on June 16th, 2004, 9:23 pm

My post wasn't meant to scare others. I apologize and I will edit it to avoid upsetting anyone else. This e-mail was not sent by a "friend" just someone who wanted to discuss an unrelated BFS topic and she threw in her concern because she knew of someone who blah blah blah. I didn't give you the entire story because I didn't finish reading it.

I tried to start a thread called "comfort posts" where I have posted links to articles I found on the web that were reassuring. No one else has posted any. I know it is scary finding those articles cause you gotta weed thru some scary stuff on Google, but there are plenty of good ones out there.

I LOVE hearing comments and stories about what people's doctor's say about ALS and BFS cause it is 99% of the time calming!

And I agree, if someone has a real strong reason to believe they have ALS, they should be posting on an ALS board.

On a positive note, I put "twitching + calf" into Google. I looked through about seven pages, and only two ALS sites came up . . . the others were "safe" stuff.

I asked my husband to screen the two sites for me. One of the ALS sites was a guy like us with a twitching calf and no weakness all freaked out and asking ALS patients what they thought of his condition, was it ALS. I had to chuckle because NO ONE responded. I guess they had bigger concerns, and he needed to be here not there.

The other site was a PALS site. My husband said, "ummm . . . you don't have this . . . this guy has some problems." He ended up telling me that the guy was so weak he slept all day and could not get out of bed. He mentioned cramping as he lay there already weakened, and the twitching was a secondary symptom of something else. (I am trying to be vague here.)

Peg
speg
Hero
Hero
 
Posts: 453
Joined: May 2nd, 2004, 4:26 pm

Postby speg on June 16th, 2004, 9:26 pm

Why can't I edit my own posts?
speg
Hero
Hero
 
Posts: 453
Joined: May 2nd, 2004, 4:26 pm

Postby garym on June 16th, 2004, 9:33 pm

are you clicking on the edit icon at the top right of the post?
garym
Moderator
Moderator
 
Posts: 1888
Joined: August 23rd, 2003, 1:24 pm
Location: Texas

Postby speg on June 16th, 2004, 9:43 pm

Yes. It says:

Sorry, but you can only edit your own posts.

Click Here to return to the topic
speg
Hero
Hero
 
Posts: 453
Joined: May 2nd, 2004, 4:26 pm

Postby Arron on June 22nd, 2004, 3:50 am

I have to say, in my own opinion, I whole heartedly believe that "speg" did indeed try to start a legetimate thread about "comforting posts" and it just got taken out of context.

Unfortunately, there is a coalition between BFS and ALS and that is why we are all here, right? I mean, if there was no similarities of twitching between BFS and ALS, none of us would be here in the first place. So with that, it is going to be very hard to not post the "nasty" stuff about ALS from time to time because it is in these posts where the differences are defined between BFS and ALS so we can know what to look for and what not to worry about.

I also have to say that once upon a time ago, I was a poster on the Brain Talk forum, or what I like to call, the "brain dead" forum, of which I had to leave after a very short time because of the overwhelming amount of sheer idiots on there, and this is also why the founder of this site stated this site in the first place, becasuse there weas no "real" BFS forum available other than the Brain Dead forum which was full of whacko's.

I am convinced that quite a few members on the brain dead forum have many other serious issues other than twitching, and I am talking about psychotic issues, where some of them just love self diagnosing and not believing numerous doctors and clean EMG's that say they are fine, and who have been non-progressive for years and years now. What more could you want as proof evidence that what you don't have is a NMD? But they continue to post bogus, misleading posts, and unfortunately, some of them filter over to this site from time to time and post their crap here as well.

What you folks need to do is learn how to read betwen the lines and look at the FACTS, and not take bogus posts as "factual", and use all of the provided information from the hundreds of knowledgeable poster's on this forum and use that information to your advantage.

You all did a great job on some of the other threads where (no names mentioned here) someone started posting about other's having ALS, when they most certainly did NOT. In fact, even the person the subjects were about came in and posted that he indeed had NOT been actually diagniosed with ALS yet, and that he was actually getting better. That is a far cry away from being "diagniosed WITH ALS".

I'm not bashing all of the members of the Brain Dead forum, but I have to say from experience, that a vast majority of them have nothing better to do than sit around and post garbage posts all day to each other with stuff taken WAY out of context, like a few of the senior member's here had pointed out.

Try not to be afraid of reading posts about ALS on this web site, simply for the fact that any information is there for comparing BFS to ALS and discounting the more serious ALS symptoms, so that YOU can understand the differences and help yourself come to your own conclusions with your own body and doctor's advice. So please, don't be afraid of some posts on here, and we certainly can't "candy coat" everything, but we can take into consideration of other's fears and take a little care when posting certain information, so we can word it so that it is useful and factual, yet "soft" on people who are new to this stuff and who are off the deep-end with anxiety.

And lastly, please... if you're going to private message someone, have some consideration for their fears and refrain from spewing out, or "volunteering" any added information you might have about ALS or other's with ALS unless the person asks for it, OK? Geeze, that should be a gimme.
Arron
Moderator
Moderator
 
Posts: 753
Joined: August 19th, 2002, 10:25 pm
Location: Sonoma, CA.

Sponsor

Sponsor
 


Return to General Topics

Who is online

Users browsing this forum: No registered users and 5 guests