About Bart1

[twitching_person]

There are 100000 people on aboutbfs.com who wants to know how this guy is. If he was diagnosed with als or not. If he has some major sign now. He was a member of that forum for about 2 years and unfortunately he was mistreated there for some people and them he never came back anymore.
If there is anybody here who have notice of him, please share. I would be happy to know that he did not get a ALS diagnosis and that he is well.
I know there is a probability of someone start with fasciculations and them get ALS some years latter, but people there seems to not accept that and react the wrong way when someone talks about this fact.
Sincerely nobody there wants bart1 to be one of this rare cases (he is only 30 years old). Everybody there would be very happy to know that he is well.
If you are reading this bart1. please respond.

 

[rose]

Bart has not posted lately, but he has been online with this site as recently as yesterday. His last post was back in November, and at that time did not have a diagnosis.

Hopefully he will see your post and respond with an update.

 

[twitching_person]

His case is getting everyone on aboutbfs.com worried. He was posting there for 2 years. He got anxious one time and some people got upset and mistreated him. I don't like the way people treat someone there when that someone is not bringing good news. It look likes censure to me and for me if the site is serious it has to accept all good and bad news.
I hope that he is well and that he got another diagnosis that is not ALS. He is only 30 years old and for a 30 years old guy get ALS starting only with fasciculations and cramps is pretty rare.
I know rare does not mean impossible. He was scared that time and anybody on his place would be scared too. People should be kind to him at that time but unfortunately that was not the case.

 

[AndyDJX]

Hi Twitching Person,

To be fair, I don't think Bart was mistreated from what I saw. You have to understand that Bart had extreme amounts of anxiety about his twitching, and he obsessed over it. He had 411 posts on the BFS boards and 68 here, including many new threads he started. To my knowledge, he didn't have any other symptoms other than twitching for almost 2 years, then he started to develop some cramping and possibly some weakness. It's not accurate to say he got anxious "one time." He got anxious all the time and wouldn't listen to anyone.

He would constantly ask the same questions over and over, overcome with anxiety about his twitching. How many of those 400+ posts on the BFS boards were him listening to reason or trying to help others? He was mostly freaking out about his twitches.

If he eventually did end up getting ALS, I am truly sorry for him. However, considering he came online so frequently before, the least he could do is update everyone with his status. He apparently had one doctor that said "possible MND" but that was premature by all accounts.

If he doesn't have ALS, then he should relieve the anxieties of those over at the BFS forums. If he does, then everyone should be adult enough to handle his very, very rare case and could focus on supporting him.

Andy

 

[twitching_person]

We all are overcoming with anxiety. The difference is how each of us can handle it and maybe he has problems handling his. If I was twitching for 2 years and them a doctor said I was getting weakness I would freak out and panic. I cant judge him and I hope that it was his doctors mistake and that he does not have ALS.
He said that his doctor told him the emg was abnormal but he never told details about what abnormal his emg had. Slow nerves, conduction blocks, neuromyotonic discharges are all abnormal and points away from als.

 

[AndyDJX]

Bart could have easily received a detailed report of his EMG, posted it here, and received feedback.

Twitching_person, you're right that we're all dealing with some degree of anxiety, but most of us manage to control ourselves and be considerate of others. Bart would ask questions, then not listen to the responses, then ask the same questions again. And again. And again. People tried to be nice to get through to him, others tried to be more direct. Some got impatient.

He didn't just freak out when his doctor noticed some weakness after 2 years, he freaked out for 2 years. Maybe he'll come out of the woodwork and set the record straight, but as was pointed out on the BFS boards, it's hard to tell with this guy. His story changed, he posted under numerous different names, etc.

 

[wright]

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.

Furthermore, stop enabling people by feeding their irrational thoughts and making things worse for them. Sometimes compassion for a person doesn't have to come in the form of kindness . . . sometimes people need a kick in the ass (just my opinion).

 

[tdamess]

There are 100000 people on aboutbfs.com who wants to know how this guy is. If he was diagnosed with als or not. If he has some major sign now. He was a member of that forum for about 2 years and unfortunately he was mistreated there for some people and them he never came back anymore.
If there is anybody here who have notice of him, please share. I would be happy to know that he did not get a ALS diagnosis and that he is well.
I know there is a probability of someone start with fasciculations and them get ALS some years latter, but people there seems to not accept that and react the wrong way when someone talks about this fact.
Sincerely nobody there wants bart1 to be one of this rare cases (he is only 30 years old). Everybody there would be very happy to know that he is well.
If you are reading this bart1. please respond.

you can send him a personal message here on the form , at top of page click on commuinty and go to members list find him that way ... good luck