Making the Tough Decision to Leave

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BartOne

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Hi,In order to get better I had to promise myself to leave the internet sites & forums. However because I’m frequently getting personal messages I’m writing this post. I don’t know if this is the right thing to do, I probably get my head blown off ;)Please understand this is not a ‘cry’ for attention’ as I don’t have any intention to communicate or post further on the forum. I’m not writing this for myself, I just need to write this so no one is thinking there is an ‘ALS case’ on the forum. Let me make something clear: I’m NOT diagnosed with ALS. I was in a very bad place for a couple of years. In one of my last posts I wrote I was going to meet a top ALS professor. At the appointment I didn’t met him but an assistant who really couldn’t tell me much. I was disappointed and made an appointment with another neuro whom I never been to before and would see me right away. This one told me this could be ALS , probably , could,.. I was in shock and it drove me over the edge. All those other doctors told me it wasn’t ALS and now I finally found one that said it could be. Now I realize I was looking for that one that proved me right and all the others wrong. I kept searching until I found one who said I was right all the time. I can’t explain it but it was like wanting something you really don’t want. I was emotionally and mentally exhausted. Two months later I got in touch with a professor who told me this was not ALS. I knew I had to believe him and get myself some help asap.I got an email from someone saying there was a lot of bad talking about me on the site so I thought it would be better not to post anymore.I had regular follow-up appointments, got into therapy, took medication, banned internet forums & sites out of my life, … It was a long & difficult road but I finally got myself together. I have an obsessive-compulsive disorder with associated hypochondriasis. It’s a daily struggle but I’m doing well. I can laugh, sleep and enjoy life again. I don’t even worry about ALS anymore.This forum is great for people who search information about their condition, find it, can move on and eventually help others. However there are people like me who will still look for more answers, stories, exceptions… To those people I want to say, don’t take the road I took. It was hell. BFS is a real condition. I’ve had every symptom on the forum from constant twitching, to knee buckling, tripping, slurring….. some are BFS related, others extreme anxiety. My advice to you, as far as a complete nutcase can give any advice:- Don’t go surfing on ALS sites, looking for exceptions and scary stories. Every second you do this is a wasted second in our short life. - Go to a good neuro, if possible get an EMG. Write down your questions and don’t leave before you got your answers. Trust them. - Read thread ‘back from the neuro’ , it’s a good one ;)- Move on, it’s ‘just’ BFS. Don’t let I ruin you or your family. At last I wanted to apologize it took so long, I needed to put myself first. And thank you to all who have supported me. I’m not looking for reactions as I will not post on the forum again. Goodbye, take care
 
Dear BartYou have what a lot of people here have, including myself, health anxiety! You did the best thing possible by staying off the site. I never had any bad feelings about you. I always felt you were an honest person and I'm glad you have gotten yourself into a good mind space. I also don't have a need to visit this site anymore but when I was in the throes of extreme anxiety, it was a godsend. So for all the newbies here, I had all the symptoms, twitching, stumbling, difficulty swallowing and guess what? I'm still fine and I still have all the same symptoms. So please stop worrying and enjoy your life. It's too short to waste one minute worrying about minor symptoms that do not mean anything.Sandra D
 
Bart you have no Idea how thankful I am that you wrote this post. I knew you never had ALS because you were a clear case of BFS. To be honest during the time I take care for newbies, I followed around your footsteps on the internet as good as possible, and this was the only conclusion I could come to.But unfortunately there are members on this board who apparently spread the message they would have been in contact with you and you definately have ALS.....I really appreciate the fact that you came back here to talk about this, you are a great guy. From your posts it was obvious you were very very scared. Yes, your posts have caused a lot of worries on this forum. But far more than this, they show one thing: STOP TRUSTING PERSONAL STORIES YOU READ IN FORUMS. So your story should actually be helpful for all the newbies that search around ALS Forums and dig out all those horror stories.I hope you now live a happy life Mr. BartOne. This post will heal a lot of wounds.
 
Thank you Bart for taking the time to come back on here and clarify...It will mean a lot to a lot of people I'm sure....And I'm very happy to hear that you are doing so well.take careML :)
 
Hey Bart-Great to hear from you. Like christinasgirl123, I also knew your case was clear-cut BFS but its very thoughtful of you to come back and clear up any misconceptions others might have. Thanks for checking in and I wish you the very best!
 
hej bart, good to read you are still among us:-)) i now know that this crap can be cured, i regard myself as cured. certainly also depends on the cause. going sugarfree and low carb did a great deal for me. be well!
 
This is great, I have read a lot about you, BartOne! I was in the contact with a member who claimed to have mailed with you a lot. He would be definitely happy to know you are OK!
 
Never had doubts BartOne. I suspect most could have guessed and I am not sure about the others, but many of us had and have the very same issues.
 
I'm very new to this site, so I haven't followed all your previous threads...but I'm impressed by your honesty. I have suffered from terrible health anxiety over the past few months, after my primary doctor told me "I don't know what disease you have." That comment threw me into a tailspin, and even after my very kind and compassionate neuro told me, "You're fine, you have nothing other than BFS, which I also have" --I still didn't believe it for a while. After all, maybe she was wrong...so I went to another neuro, who told me the same thing...and then my friend had a stroke, and I started thinking, well,maybe my symptoms indicated that I was headed for a stroke, and then I went back to the GP, and so on, and so on...until finally I woke up and told myself that I was sick of doctors and I was sick of thinking I was sick. I started hearing myself and my conversations with friends -- all I talked about was symptoms of this or that!! I had a diagnosis, why couldn't I leave it alone? Granted, it's an odd one, but still -- it's a diagnosis. So, as I wrote in an earlier post, I'm trying to act healthy so that my thought processes will follow. Sounds like you're on the right track. All of this is to say -- I get it, I've been there, I have the obsessive trait also. It really is a matter, I think, of loving yourself enough to believe you're worthy of good health. Aren't we all?Good luck.
 
I'm very new to this site, so I haven't followed all your previous threads...but I'm impressed by your honesty. I have suffered from terrible health anxiety over the past few months, after my primary doctor told me "I don't know what disease you have." That comment threw me into a tailspin, and even after my very kind and compassionate neuro told me, "You're fine, you have nothing other than BFS, which I also have" --I still didn't believe it for a while. After all, maybe she was wrong...so I went to another neuro, who told me the same thing...and then my friend had a stroke, and I started thinking, well,maybe my symptoms indicated that I was headed for a stroke, and then I went back to the GP, and so on, and so on...until finally I woke up and told myself that I was sick of doctors and I was sick of thinking I was sick. I started hearing myself and my conversations with friends -- all I talked about was symptoms of this or that!! I had a diagnosis, why couldn't I leave it alone? Granted, it's an odd one, but still -- it's a diagnosis. So, as I wrote in an earlier post, I'm trying to act healthy so that my thought processes will follow. Sounds like you're on the right track. All of this is to say -- I get it, I've been there, I have the obsessive trait also. It really is a matter, I think, of loving yourself enough to believe you're worthy of good health. Aren't we all?Good luck.
 
Bart,Thank you for clarifying what was going on with your health. I had read your story on the "Back from nuero" sticky here and thought our symptoms and story seemed very similar. Thank you for taking the time to clarify that you are doing fine. I hope you continue to do well.
 

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