Of doctors and dilettantes

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

Moderators: JohnV, Arron, garym

Re: Of doctors and dilettantes

Postby jerry2 on November 18th, 2012, 2:20 am

I think you made it clear enough, even for me, that this will have a happy ending, right in the beginning of the story and you made several other such claims. I didn't think for a second that you have ALS. THe fact is, unfortunately, I have yet to read about a happy ending for anybody who has ALS. THe thing that makes that disease so fearfull is the fact there is not happy ending with it, never. If you scared anybody, me with anxiety disorder can tell you, it is entirely their fault. I didn't even think you overdramatised things, they were very dramatic for you, as a "player". You didn't even blame the doctors that by misdiagnosis sent you down this path. I would take half the story of just $%#$#% them ;-)
Last edited by jerry2 on November 18th, 2012, 5:04 am, edited 2 times in total.
jerry2
Saint
Saint
 
Posts: 928
Joined: October 4th, 2011, 2:25 am
Location: Europe

Re: Of doctors and dilettantes

Postby MarioMangler on November 18th, 2012, 2:58 am

I will be blunt. This is one of the most helpful and heartfelt posts I have ever read on this board. If you are forced to take it down, or if the admins take it down, simply because aboutbfs members are too fragile and get scared by things that aren't even scary, then f it. I am done with this board forever. I mean to say this in the nicest way possible, but if anyone PMs you and tells you this post does not belong on this board, kindly tell them to f off. Please. For me.
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
User avatar
MarioMangler
Saint
Saint
 
Posts: 1671
Joined: September 16th, 2008, 3:23 pm
Location: Upland, California

Re: Of doctors and dilettantes

Postby Tobes on November 18th, 2012, 3:15 am

Hey guys,

thanks for your nice words and support! :-)

I really do appreciate them as this is really giving me a headache.

I hate causing pain in other people and I really doubted whether writing my recent experiences up was a good idea, after all.

But then again, I totally buy into what you keep praying, Mario.
Nobody has ever been cured from anxiety by closing his eyes and isolating himself from the world and reality.

And besides, the glimpse of reality I am offering in my story is actually not a bad one, but really an encouraging one with a happy ending!!!
You can't stop the waves, but you can learn to surf!
Tobes
Senior Member
Senior Member
 
Posts: 82
Joined: July 4th, 2012, 6:09 am
Location: GERMANY

Re: Of doctors and dilettantes

Postby chrissi on November 18th, 2012, 3:23 am

Seriously....hey guys, are you nuts??? I have seen a lot of *beep* happening on here, people showing their worst behaviours when it comes to their anxiety.... Actually one of the reasons I decided not to take part as much anymore as I used to in the beginnings.... Over- dramatizing???? In fact.... It is questionable who is over- dramatizing here: someone writing down his struggle when he was told to have likely ALS ....or someone who is scared by this story that clearly has 3 messages: if it looks like BFS, it is BFS. BFS in a nutshell has all relevant information you need to know about BFS. Think about how much medical reassurance you seek.... It might send you to hell for nothing. As I already said... This is the 3rd tine within one year that this happened to twitchers from this board. And I guess it happened a thousand times in stories in the internet. Which left you there with the message: BFS turned into ALS. So it was actually ME that asked Tobi to write it down for YOU. BTW, did you know that the first things he said after telling me the bad news ( and that was highly surreal in that moment): OMG, that will cause such a bad anxiety relapse on the board if that comes out...." He feared what this nightmare would do to YOU guys. One of his first thoughts.... I asked him to write it down for YOU. And I read it 4 times now and still cannot find ans scary message in there. What is the scary message? That doctors make mistakes..?? Come on... I did not ask him to write it down in a way that takes a whole day away from his friends and his gorgeous girlfriend, because I think he is now very aware how precious his time is...but he did. For you. partly because I asked hin to do this favour. for you. For all those that are scared *beep* by insensitive doctors. For those that cannot see the true meaning behind this: you should DEFINATELY work on your anxiety, because it has ruined your perception....yes, I am *beep*. Have a nice sunday..
Last edited by chrissi on November 18th, 2012, 9:26 am, edited 2 times in total.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
User avatar
chrissi
Saint
Saint
 
Posts: 1538
Joined: August 10th, 2011, 2:06 am
Location: Germany

Re: Of doctors and dilettantes

Postby MarioMangler on November 18th, 2012, 3:27 am

A few people PM'd me about your first post, and I told them all the same thing. I said, "Watch, it is a false diagnosis story. You see them from time to time on this board, and they always start the same way." I promised people that that was where your story was going, in part because you even spelled it out for us in the first couple paragraphs. I was like, "Watch, this is going to be a real cool post, if people only have the patience and wisdom to actually pay attention to where it is going."

Because, well, I know this board. And I know these people. And I know that patience, common sense thinking, and wisdom aren't always in abundance around here.

By the way, you will laugh at this next part. In my follow up PM's, I would tell people, "Here is what I predict is going to happen. You will post your story, and it will help a lot of people. But behind the scenes some people are going to PM the admins and complain that it scared them. And then they will try to get it deleted behind your back." I told people who PM'd me to watch, I predict that is going to happen. Because, again, I have been around here forever and I know how this place works. Posts like yours are often on borrowed time because of how fragile this place is.

Anyway, glad the post is still here, and I would be very excited if it was still even here next week. Like I said before, I think it is an amazing post and I think it has the potential to really help a lot of people. Assuming they are in the position to be want to be helped at the moment.
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
User avatar
MarioMangler
Saint
Saint
 
Posts: 1671
Joined: September 16th, 2008, 3:23 pm
Location: Upland, California

Re: Of doctors and dilettantes

Postby jerry2 on November 18th, 2012, 5:04 am

From your experience from the story my "neuros scared me" posts sound like a fairy tale ;-) Now I almost thank the decision not to go to EMG at all without obvious weakness. Thank you again for sharing your story. I hope it stays, why wouldn't it?
jerry2
Saint
Saint
 
Posts: 928
Joined: October 4th, 2011, 2:25 am
Location: Europe

Re: Of doctors and dilettantes

Postby Tobes on November 18th, 2012, 6:01 am

Hey Mario,

yeah, that actually makes me laugh, indeed! :D

I knew that this was basically an anxiety forum and that I would be in good company around here.

But I did not see this coming, particularly after all the effort I made to not be unclear about where my story was heading.

Or so I thought.

Anyhow, I'm okay now with it and adopt your "Take-it-Or-Leave-It" attitude.

I, for my part, would have been happy to read a story like this and would have nominated it for my success stories thread.


Btw, thanks to LApea for the kindness of posting me up there :D

Ever since I had the second beer after the thumbs-up in Berlin I kind of envisioned my story to belong there...a bad thing turned good and a full success in terms of BFS!
You can't stop the waves, but you can learn to surf!
Tobes
Senior Member
Senior Member
 
Posts: 82
Joined: July 4th, 2012, 6:09 am
Location: GERMANY

Re: Of doctors and dilettantes

Postby Floydian on November 18th, 2012, 10:46 am

Hi Tobes, for me your first post was very clear. So I can't imagine that you did any harm with it.
But anyway... I'm so glad for you it turned out to be okay, that's the most important thing.
Thanks for sharing it with us.
Floydian
Selfless giver of time
Selfless giver of time
 
Posts: 199
Joined: August 27th, 2012, 7:47 am
Location: Netherlands

Re: Of doctors and dilettantes

Postby LApea on November 18th, 2012, 5:09 pm

A big cheers to you Tobes, you really deserve it.

Just seeing how you would post up success stories, even on times when you felt so lost and confused. I read your last post on your success stories thread, and you expressed how helpless you were feeling and how much pain you were in. You described the dark clouds gathering around you, and how you were just struggling to function.

Then your whole ordeal happened, and I can only imagine the fear you felt. Yet through it all, you seem to have remained very determined to not give up on yourself. While I would never wish that happened to you, it seems to have helped you overcome the biggest obstacle, fear. You have a new lease on life, so to speak. I hope you really take advantage of feeling great and knowing it's just crappy ole bfs.

I go through many days of anxiety and fear, but nothing in your post is scary, it is comforting. Knowing that even during the most trying and scary times, there can always be a light if you seek it.

Great job,

Jay
You drown not by falling into a river, but by staying submerged in it. -Paulo Coelho
User avatar
LApea
Selfless giver of time
Selfless giver of time
 
Posts: 247
Joined: August 1st, 2012, 10:53 am
Location: California

Re: Of doctors and dilettantes

Sponsor

Sponsor
 

Previous

Return to Experiences with BFS

Who is online

Users browsing this forum: No registered users and 6 guests