Do not fear, I have been twitching for 5 years now

[barosa40]

All,

I wanted to tell everyone not to fear. BFS is real and responsible for your symptoms, not anything that's fatal. Believe me, I went through it all, twitching all over, tired, tongue thing, testing, etc.... Guess what, after 5 years I am still alive and kicking. The answer to getting well is truly moving on and concentrating on the important things of your lives, not fear. If I can be of help to anyone please PM me

P.S. e-mail removed due to flames from board members.

[basso]

Yes, good advice. Don't fear, BFS is real. Setting up an exclusive email address is also a great idea, so much better than just the banality of the pm box. I have done likewise, and can be reached at the following. [email protected]
Everyone should do the same. Bill has been reading every ones private messages, we must circumvent this. No wait, then I won't get the juicy gossip from him anymore. I can't believe that C, S, S, and M met, and had an orgy. Sheesh, why wasn't I invited?

Basso

[emmyangel]

I'm thinking Basso is trying to be funny. He really should try harder.
Most annoying! People are trying to come here for help and really don't need this.

[basso]

It is called ironic slap-stick. People are here for support, but someones first post is always suspect when they solicit others to post to a private e-mail. I've been around awhile, and though I am not infallible, my instincts have ever proven correct.

I'm sure that whatever barosa40 has to say, he can say in a pm, or on the board. The impression otherwise is grandstanding. People are already asking questions, that is the purpose of this site, that is the true nature of support.

Glad to see you are feeling better kristy.

Basso

[SuziQ]

I'm thinking Basso is trying to be funny. He really should try harder.
Most annoying! People are trying to come here for help and really don't need this.

I have to agree with Basso, here. Not that barosa necessarily has bad intentions, but it IS highly suspect, and a serious breach of internetiquette to post one's e-mail address on a public message board, particularly without having established a trust and a history with the board's members.

As Basso has said, what's so wrong with the pm box? Perhaps berosa doesn't realize that is how we prefer to communicate here.

I would certainly be wary. Basso is always looking out for the best interests of the people on the board, but of course you wouldn't know that kristy because you appeared out of nowhere and don't even know basso, or his heart for the people here.

Yet, you rushed to judgment, anyway. How terribly "helpful" of you.

Sue

[barosa40]

Too bad,

I was trying to help many people here. I am very familiar with the boards. I used to read them for hours thinking I was dying of a terible disease. I was obsessed with the symptoms of BFS and they took a toll on my life for nearly 3 years plus. I have been doing very well for the last two years because I finally realized that I was not dying, just coping with a difficult set of symptoms. I offered my e-mail in order to answer any questions that someone may not want to post to a public audience. Sorry to cause the paranoia. If you don't want my help, do yourself and me a favor, please ignore me.

[SuziQ]

Barosa,
I just want to answer you publicly so that others can understand our rationale here.

No one is singling you out or picking on you as a predator, but you have to admit, in this age of spam and miracle cure-all's, it would be reckless to contact a stranger on a message board via e-mail when we have a perfectly private and reliable system of communication already via the pm's.

There have been quite a few people who have joined this forum only to solicit people for money to purchase their snake oil product du jour. It's the nature of the beast. Desperate people will resort to desperate measures in order to feel better.

If you sincerely want to help, I commend you, but why not use the pm's?

Besides that, do you think the rest of us are doing such a terrible job of helping? No offense, but get over yourself. You can't be the self-appointed Savior of the bfs board, e-mail address or not.

I mean, what are we, chopped liver? And we manage to help just fine, without giving out our e-mail addresses.

Blessings,
Sue

[basso]

Well said, SuziQ, as per usual. There is evidence enough on this great forum, as well as very intelligent, and intuitive people....not to mention a doctor, or two. People are free to do as they want, just as I am free to highlight the incongruity of certain netiquette. Help is always welcome, and so welcome. However, anyone who has ever given out an email address on their first post, has had little staying power, for their motives were not as altruistic as they first presented. There is an area where people can include their email, etc, if they so choose, and no trumpeting of such email is then necessary.

Why not just start helping to the many questions that are already posed, and on a daily basis. With your five years of garnered knowledge, this would portend a noble start, indeed.

Basso

[Christina]

Basso said:

I can't believe that C, S, S, and M met, and had an orgy. Sheesh, why wasn't I invited?

It was great by the way .....we missed you.



Christina

[barosa40]

I never said I was against any PM or answering questions on the forum. And I am not trying to be a savior...which is a ridiculous notion. I was just trying to help others. By the way, my e-mails have been around 50 plus so far .... Really, as I said, I was just trying to help. I think it's comical or "incongruous” to believe that some feel the solemn duty to screen a "snake-oil-salesman" for others on this board. I really do believe that individuals are smart enough to read internet scams. Besides, where do you get the notion that I am selling something to the members here? Do you have proof of your foolish claims? You know... I have never attacked anyone on the board and I am not about to start. Let's concentrate on helping others get over the fear of ALS, not argue over my credibility. I can assure you, I am the real deal, been through it all, and was on this board reading posts long before most of you. Don't worry, I am not trying to steal anyone's thunder. Hopefully, I can add some insight into a few issues and provide some assurance to others that life does go on once BFS is dealt with mentally. Thanks All

[SuziQ]

I never said I was against any PM or answering questions on the forum.

Then why did you post your email address? Why didn't you just invite people to pm you? That's what everyone else does. We hardly know you, and we were merely suggesting that you ought to get to know people before deciding what you think they need, and asking them to e-mail you.

If you can't get over my harmless first post, how are you going to get over BFS anxieties?

Who said we have BFS anxiety? At all?

I just find your approach entirely too presumptuous.

Not everyone who posts on this board is freaked out over bfs. Quite the contrary. Some of us are quite content and were bumping along just fine without your intervention. And we are able to help others without obtaining their personal, private information.

I wouldn't e-mail a stranger on a message board. Hell, I don't e-mail any of the VETS on this board, who I've come to know and love.

But whatever. 50 e-mails, you say? Wow. Pretty impressive, considering we barely have 2 visitors on this board at any given time.

Must have come from all those spammers I gave your address to.

Sue

[barosa40]

Here, if this helps anyone, please do not e-mail me as the controllers of the board forbid this. By the way SuziQ, there have been over 370 plus views on this thread. 50 e-mails believe it or not [b]is possible, do the math. OK, you got me, I actually counted 46. All, if you would like to converse, PM me or post. No more need to waste anyone's precious time over this thread anymore. Thanks Have a good one.[/b]

[Cardu]

I know I shouldn't get involved, however, if someone wants to post their email address, what is the big deal? If he wants to receive email from strangers, that is his business. Why waste time typing about it?
Just my thoughts...
Amy

[barosa40]

Just checking in. I am still twitching but doing well. Just proof it is only BFS. Hope all is well with everyone.

[BFSBurger]

Can you expand on doing well? Any changes since 2007?