Another great site for help

BFS Online Support Group

Moderators: JohnV, Arron, garym

Another great site for help

Postby Arron on August 21st, 2002, 10:59 pm

Hi everyone, I am a regular on here and a fellow twitcher, anxiety sufferer and so on. This site is great and John is doing a great job but this site isn't as active as another and if you are in need of some help right now, while this site is getting back to being in full bore mode again, try going here; http://neuro-mancer.mgh.harvard.edu/cgi ... &SUBMIT=Go
and you will find some help. I believe John, the curator of this site, is there sometimes as well. I found the link to this new About BFS web site on there.

I am NOT trying to divert traffic to that other web site, especially as I feel that this one is much more focused on BFS rather than 20 other things as well, like the BrainTalk web site link I just gave you, but I know how desperate some of you are with horrible anxieties and needing to get reassurance of what to do or simply talk with other's that are going through the same thing as you and that is the ONLY reason I offer this other link. Once this web site becomes as popular as it was before the hackers ripped it apart, it will certainly be the best BFS web site there is. Until then, if you need more help or need to talk, try the link I gave you for now. If that link doesn't work, go to http://www.braintalk.com and in the index, go to the "neuromuscular" forum. That is the same place as the link I gave you and it is all people with BFS, fibro, anxieties, twitches, jolts, tremors, fatigue and so on and they will help you.
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Hi Arron

Postby Patty33 on August 23rd, 2002, 9:27 pm

Hi Arron,

I made it back here. You had helped me a bunch with the information you had on ALS and BFS. Not sure if you remember me but I also wrote the long post in the last forum that came from my heart to help a woman out. I am doing much better now. I have been twitching now for about 2 months. Yesterday I had an elbow twitching which was almost a funny tickling sensation. I, like you, just want to help anyone out there who has become a " twitcher" like the rest of us.....

I hope you are doing well.
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other sites

Postby Dr. Jon on August 24th, 2002, 5:05 am

Thanks arron, im new to this bfs site and find it very helpful. Any info from other sites can only help. Your right about this one staying focused with bfs only. My many thanks to john for creating it!
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Postby Arron on August 26th, 2002, 12:58 pm

Thanks Patty, sure I remember you and I'm glad you are doing well. I really like this site because it is so focused on BFS and helping other's. Now that I have the knowledge that I have (not that I claim to know everything, because I don't) I am glad to help oyther's make the right choices as to seeing a good neuro or helping them ease their fears and that they are NOT alone in this strange world of twitching and other symptoms.

Dr. Jon, you are right and that is the only reason I mentioned the other web site, so it could help people that are mis informed and sacared to death that they has ALS because they are twitching and that is simply NOT the case 99% of the time. I like this site and think John is doing a fantastic job and a great service to other's by having this site available. I would never want or try to re-direct traffic to another site. It's just that since this new one was up, it isn't known yet and even most of the old posters are lost in cyber space somehow. I hope they find their way back. I'd like to get my hands on those hacker bastards for about 5 minutes and see what a difficult time they have trying to fart after I bend their legs around backwards and shove them up their ass! They killed a server that was truely helping people and literally saving lives! I was a total mess before I found John's site and it saved my sanity... that's no exaggeration! Now I want to give back what I took. I KNOW the fear some people go through. I was a TOTAL wreck and started planning my own funeral! That sucked and boy was I misinformed! This site is a god send.
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Neuro forum and hackers

Postby DaveKD on August 27th, 2002, 2:18 pm

I agree Arron this page does save lives. I like your idea of what to do with the hackers! For me, other neuro forums are too much because I read about some of the other diseases and get to depressed thinking I will get those symptoms/diseases as well.
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This site is soooooo helpful!

Postby Dr. Jon on August 28th, 2002, 3:28 am

To both aaron and dave, i totally agree with you both. I never thought i would find myself posting on any site let alone a 'bfs' site. But it is an amazing feeling to know that there are others out there that can actually relate! The more i stressed about the fasics the worse they got which then lead to panic which then lead to me literally thinking i was loosing my mind! I joined after the hack attack. it sounds like there were many others so i hope they do find there way back. I still get the twitches but am much better able to handle them now. So thanks again to all that contribute!
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Postby Arron on August 29th, 2002, 12:32 pm

I have to take back what I said about the Brain Talk.com web site being another good place to go. I was wrong! I have been having LOTS of trouble there with idiots and VERY rude people. I would NOT recommend anyone going there. This web site here is by far THE BEST and to the point.
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Postby charlene on September 1st, 2002, 11:32 am

I have also been to the web site at MGH(spent lots of time there over the past 6 months, but never felt comfortable in posting) and found it to be information overload. The neuromuscular site was not very helpful and I found this site to be much more focused and the people who post here are friendly and truely concerned.
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Postby JohnV on October 24th, 2002, 9:42 am

Hi all,

Thanks for the kind words, while I am not very active in the forums themselves, I do appreciate hearing that they are helping.

I frequented the MGH Nuromuscular forum quite a bit in the past. I created these forums to help narrow the focus of the Neuromuscular forum, and since there seemed to be so much non-productive posting going on over there.

I continue to direct people over there on occasion, as an additional resource since there are some real experts there on ALS, supplements, etc., but I also happy to be able to provide this service.

I really appreciate all of those who spend their time in the forums helping others who are experiencing the same fears that most of us had in the beginning (and still struggle with at times). You guys are the heros here that make this site worthwhile.
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Postby Arron on October 24th, 2002, 10:07 am

John, you are great! That's all I can say... oh, except for "thank you" too. You have literally save people's lives with this great forum and service you have provided. We are not the hero's you said we are. YOU my friend, are the true hero because if not for you, this forum would not exist and many of us would have most likely gone off the deep-end. Thanks again!
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Thanks to all of you

Postby jblack on November 9th, 2002, 9:41 pm

I feel obligated to post a little here, because I realize that the more of us who share, the greater the collective reassurance is. I won't rehash my experiences now, except to say that Arron's BFS in a Nutshell posts pretty much described the last month of my life. An afternoon reading all the posts here has done me a world of good. I'm swallowing easily and I just looked at my calves -- not a twitch in site. Amazing. Anxiety is truly a powerful thing.

In any case, thanks to John for facilitating this and to Arron for taking the reins. If you hadn't, this site very well could have turned into the kind fear-mongering mess we're all plenty familiar with -- those sites are a big part of what got us into this state. Your persistence is to be applauded, Arron.

One disappointment: this site actually isn't that easy to find. I suspect it doesn't do well in Google because it's largely dynamic pages and not many sites link here. After the first time I found it, I forgot to bookmark it and actually had to take wild stabs at URLs until I found it again. I only bring it up because I hate to think of all the people over at the medhelp.org site driving themselves insane with anxiety when they could be getting to the heart of the matter over here.

Bless you all for your support!

jesse.
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twitches that hurt

Postby shar shar on January 28th, 2003, 8:02 pm

Hi,
I'm a new member. I started with twitches this past fall. I'll have to say that since I've found this website, my twitches have gotton so much better!! I had a normal exam from the neuro and my blood work all came back normal. He told me they were benign. Question: can he be sure they're benign without any further testing?
I have twitches in my calves but not as much as I did. One thing I've had happen just 3 times is a very painful quick stabbing feeling in the heel of my left foot. This just started so I didn't mention it to the neuro. Could this be a twitch related to bfs? I did experience a sore arch area of the same foot about 5 months ago. It lasted for just a few weeks - on and off. Maybe I have something going on with my foot that's not related to bfs. Just wondering if anyone else has any painful stabbing twitches? It's very quick like a twitch but very very painful. Any replies would be appreciated.
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benign

Postby Davidd on February 1st, 2003, 7:18 pm

shar shar--

I am not a doctor but if I were you I would believe what the neurologist said and be happy that you came back with such a good report! I have not experienced the pain that you are talking about so I don't know if it is related. I saw MANY doctors before I actually started to settle down and stop worrying about this so much...so I would say that if getting a second opinion would put your mind at ease then go for it. My guess, however, is that you are going to get a healthy report from whatever doctor you see!

Take care,

--David
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OTHER SITE

Postby SCOTT on March 18th, 2003, 3:45 pm

YES,IT IS GOOD
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OTHER SITE

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