About Bart1

Information about how to manage or reduce the severity of BFS symptoms

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Re: About Bart1

Postby AndyTwitchalot on July 6th, 2010, 2:10 pm

Are you talking about me or bart?
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Re: About Bart1

Postby RobbieBfs on July 6th, 2010, 2:36 pm

:mrgreen:
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Re: About Bart1

Postby MarioMangler on July 6th, 2010, 2:50 pm

Look I've said it before and I'll say it again. Bart has a lot of red flags in his story and he got run off the bfs board pretty much for a reason. He had multiple accounts, he had different usernames, his story changed along the way, etc. His up and down mannerisms drove everyone crazy.

I have nothing but good wishes for the guy, but when I'm harsh when I talk about him... I'm doing that for a reason. I'm not doing that to be mean to Bart. I'm doing that for the hundreds of OTHER people who I know are going to read this thread (and the other Bart threat, and the other Bart thread, and the other Bart thread, etc.) and are going to flip out and decide that aboutbfs.com is too scary and they have to leave. That's the kind of sh*t that oldtimers see far too much on this board and that I try to help nip in the bud. The absolute worst thing you can have on here is a game of telephone where people start spreading rumors without taking the time to read all the past history. It happens way too much and-- as one of the few oldtimers on this board right now-- I try to stop it whenever I get the chance.

Was Bart diagnosed with ALS? Who knows. He certainly wasn't diagnosed when he was on here. Oh sure, he might have diagnosed himself, but there have been plenty of people who diagnosed themselves with ALS and then came here and wrote about it and panicked everyone. You might want to research a certain crackpot named Carol (research "Carol's Story" sometime) and see how that one turned out. Guess what, she didn't have ALS. Self diagnosis that turned into a complete board panic. "Oops, sorry about that everyone. My bad. Sorry for scaring everyone."

All I know is that Bart raised a lot of red flags when he was here and most of the old timers and admins got tired of his games and basically called him out on them. So he left and he went to the ALS board. Where, as Andy just pointed out, his "date of diagnosis" recently changed and then suddenly disappeared. Hmmm. Couldn't see that one coming.

Like I said, I have nothing but good wishes for Bart and whatever issues he is dealing with. He clearly has some problems going on. But keep in mind, stuff he is posting on other sites is NOT relevant here and has nothing to do with YOUR bfs. It's complete apples and oranges. Whatever he's got going on is Bart's thing.

There's nothing that drives an old timer crazier than when newbie posters bring stuff from other boards back and start writing about it here. That's the biggest faux pas 101 on this board and is the quickest way to drive everyone crazy. Look, this site is about bfs and is intended to support new and longtime bfs sufferers. It's not a place to write about things that aren't BFS and never will be BFS. Keep that in mind before you bring things from other sites and start talking about them here. That's the quickest way to get other posters to start ignoring you.

When I post a harsh reaction towards certain things on this board-- remember-- it's not because I'm annoyed by a certain poster or because I think someone needs some "tough love." It's because I'm aware that hundreds of posters in the future are going to read this, and because I think they need some perspective on what they are reading. Nearly every single thing I write is intended not for one person, but for the good of the board. I always try to keep the big picture in mind before I write anything.

And that's why I say not to waste your time obsessing over Bart's story. Let Bart obsess over his own issues. This story has nothing to do with you and your BFS. It's not going to have anything to do with you or your BFS either.

BFS isn't scary at all. It's just BFS. Remember, you are the one who is making it scary.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: About Bart1

Postby garym on July 6th, 2010, 2:58 pm

Hello guys,

Just wanted to take a second and remind everyone here that we are operating on the internet and people can say whatever they want....even if it isn't true. Now I'm not saying that Bart1 is lying, I can't say for sure, but I personally don't believe he has als. That said, if he does, I feel terrible for him and his family. If he does actually have als, he is the first....not the first to make such claims, but the first to truly have received the dx. Over the years, there have been several members here that have claimed to have received the dreaded dx, but in all cases it was proven not to be true either by the person making the claim or other members here.

I would also like to point out that some members actually have more than one user name and some post using different names. While I can tell who these members are, I generally don't stop them unless they are being mean spirited. Some people just need to start over on a public board like this sometimes, and I'm all for second chances. So just because you haven't seen a post from a certain user in a while, doesn't mean they aren't still active.....they just might have needed a reset. But I do monitor the board for bad actors/trolls and ban them when necessary. I can't, however, read every post so please don't hesitate to pm me if someone is being offensive or if you think something is out of line. I want this site to always be one of comfort and factual info for those suffering from BFS.

Take care,
Gary
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Re: About Bart1

Postby RobbieBfs on July 6th, 2010, 3:05 pm

:mrgreen:
Last edited by RobbieBfs on October 28th, 2010, 10:23 am, edited 1 time in total.
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Re: About Bart1

Postby jro on July 6th, 2010, 3:37 pm

Andy,

Do you have any insight into why Bart1 said he was diagnosed and then changed his status to not diagnosed? I'm asking you since you said you communicated with him. Even if you don't know for sure, your opinion may be helpful. I think there are enough people that really want to know the truth about this case. Maybe he had someone suggest he had ALS and that put him over the edge mentally but later someone more qualified perhaps took ALS off the table. If he has something other than ALS or BFS, his journey might be relevant to others here. Regardless of his dx, he seemed to really suffer from his symptoms and it always suprised me that he never too any meds for it despite the fact that he seemed to be utterly tortured with his symptoms. It really is too bad that he reaches out for help and then creates mystery about his situation for those that try to help him.

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Re: About Bart1

Postby Noturnus on July 6th, 2010, 4:10 pm

I posted on als forums asking him to say if he got diagnosed or not. Other people there said that he is not posting since 12/2009 but he is accessing the site frequently. They told that on his last post he was not diagnosed yet. He even accessed aboutbfs site on 05/2010 (one month ago) So he is still coming here sometimes. 4 days ago I checked his profile and there was the date he was diagnosed. yesterday I accessed again his profile and that date was not there anymore?
Why did he remove the diagnosis date? I think he is getting mixed opinions from his doctors and sometimes he thinks he got als and sometimes he thinks he did not got this. As the time passes and he is still in doubt if he has als or no, the odds is that he does not have it. When ALS begins, 6 months is enough for it to give no doubt.
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Re: About Bart1

Postby AndyTwitchalot on July 6th, 2010, 4:40 pm

RobbieBfs wrote:
AndyTwitchalot wrote:Are you talking about me or bart?


If you posted there also, may I ask why? I'm just curious.


Hey Robbie,

I generally post there to help those who show up wondering if their twitching means they have ALS, when it clearly doesn't. While it might be nice to think that all of the folks who get fasciculations would immediately come to the BFS boards, many go straight to the ALS site. You wouldn't believe the amount of people who freak out about ALS without having any information about it, and they immediately rush to the ALS site looking for answers. I try to assuage their fears if they are not meant to be there, and in doing so, I also try to alleviate the folks who already have ALS from dealing with every single panicked twitcher.

But my presence there is not entirely selfless, either. I started with twitching, but I also have atrophy, exertional weakness and a slightly abnormal EMG report. None of my doctors think it's ALS (and therefore I don't either), but it's also more significant than BFS. I chat with other folks who are in between as well. I only post on the portion of the boards that is designed for the undiagnosed; I don't intrude on any other part of the site.

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Re: About Bart1

Postby AndyTwitchalot on July 6th, 2010, 4:51 pm

jro wrote:Andy,

Do you have any insight into why Bart1 said he was diagnosed and then changed his status to not diagnosed? I'm asking you since you said you communicated with him. Even if you don't know for sure, your opinion may be helpful. I think there are enough people that really want to know the truth about this case. Maybe he had someone suggest he had ALS and that put him over the edge mentally but later someone more qualified perhaps took ALS off the table. If he has something other than ALS or BFS, his journey might be relevant to others here. Regardless of his dx, he seemed to really suffer from his symptoms and it always suprised me that he never too any meds for it despite the fact that he seemed to be utterly tortured with his symptoms. It really is too bad that he reaches out for help and then creates mystery about his situation for those that try to help him.

jro


Here's my guess as to why he changed his date, but it's only a possibility. One of Bart's doctors, I believe it was his PCP, apparently told him that he could have "possible MND." This was not a neuro, nor a specialist in ALS, and all he said was it was possible. I'm sure a lot of doctors who don't know much about ALS see constant twitching, confusing EMG results, and some weakness and shrug their shoulders before sending the patient to a specialist. Bart may have changed his "diagnosis" status then, but taken it off when a more informed neurologist didn't concur. Honestly, I really don't know. No one on the ALS boards thought he had ALS, and for two years, none of his doctors did either. It would be nice of him to show up and set the record straight, but who knows what his true story is. As Gary pointed out, this is the internet and it's pretty hard for me to trust someone who has such an erratic and ambiguous past.
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Re: About Bart1

Postby RobbieBfs on July 6th, 2010, 5:31 pm

:mrgreen:
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Re: About Bart1

Postby Barbie800 on July 6th, 2010, 7:44 pm

We really don't know if Bart is telling the truth or not. Remember, he had different names on this board. Then your saying he said he had ALS now he is undiagnosed. You can't believe everything you read. My best advice.. .believe your doctors, not Bart1.
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Re: About Bart1

Postby RunningBear on July 6th, 2010, 9:06 pm

Barbie800 wrote:We really don't know if Bart is telling the truth or not. Remember, he had different names on this board. Then your saying he said he had ALS now he is undiagnosed. You can't believe everything you read. My best advice.. .believe your doctors, not Bart1.


Very sage, excellent advice from Barbie!

What kind of a person would post publicly and privately about their fears and anxiety, have four EMGS, and then state they have A word and disappear?? I hope they don't have it.
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Re: About Bart1

Postby AndyTwitchalot on July 7th, 2010, 1:45 pm

This was just posted by a particularly helpful member of the ALS boards:

"Bart got his diagnosis of BFCS, even though he kept saying that he didn't have a firm diagnosis. It wasn't "firm" because for some odd reason, Bart couldn't and wouldn't accept it. He saw neuro's for nearly 2 years and their opinions didn't change.

Go tell the people on the BFS forum that as far as we know, nothing has changed with Bart1."
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Re: About Bart1

Postby MarioMangler on July 7th, 2010, 1:56 pm

Can we please not make any more threads about Bart after this. :D
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: About Bart1

Postby RobbieBfs on July 7th, 2010, 2:15 pm

:mrgreen:
Last edited by RobbieBfs on October 28th, 2010, 10:25 am, edited 1 time in total.
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Re: About Bart1

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