Page 1 of 2

meet ups

PostPosted: April 6th, 2011, 8:52 pm
by johnnythejet
Just out of curiousity, how many people from this community have actually met up with someone else here? I remember seeing a post by Darr about doing it, but I wonder how many more. I would expect it to be quite relaxing to laugh about this stuff over a beer or coffee.

Re: meet ups

PostPosted: April 7th, 2011, 12:22 am
by mommylondon
There are quite a few of us on here planning on meeting up at my place this summer Johnny. Let me know if you would like to try to make it, I'm in Indiana.

Take care

Robynn :D

Re: meet ups

PostPosted: April 7th, 2011, 12:30 am
by RobbieBfs
1

Re: meet ups

PostPosted: April 7th, 2011, 12:34 am
by johnnythejet
RobbieBfs wrote:I'm getting blocked again by one of Robynn's minions....so I am reposting....and will continue.....(give it up please) Plus this info I provide is new and educational.


I come back because of great news!

I had my eagerly anticipated doctor's appt today for my macular degeneration eye disease I was dx'd with in 2007. The limited good news I was expecting was that I had 5+ years of not being legally blind. My new doctor is one of the world's leading retinal and macular disease specialists and genetic scientists. I had 3 hours of testing. Had an eye EMG, an EYE CT scan, etc. Came back and said I do NOT have macular degeneration/dystrophy afterall but did have something very unusual going on. He said in his 30 years he has never seen anything like it but said the word "BENIGN". HMMMM....... He told me I have had evidence of prior RPE atrophy but it no longer was atrophied. He has never seen this before. I told him how can it be benign and yet atrophied and then not and still be symptomatic. He said, can you read? I said yes. He then said with my glasses I am still 20/20 which cannot be discounted, albeit it with a few symptoms. Get this, he said my macular clusters had to be either caused by either a virus or some type of inflammation. I eventually brought up the whole BFS thing as a side note, almost embarassed to do so, but he was very intrigued. Thankfully my neuro is also from Columbia Pres. He wants me back in 3 months. He said the damage done is done but is very old and will not get worse. I have a new lease on life now. I feel like a new man. I am his case study bytch right now. He currently has 4 grants, and has a total of 25 in his career. And I think with me he sees a possible 26th. But he promised me I am BENIGN!!!!!!!!!!!!!!

I gave my doctor my old doctor's transcripts of my dx and he said to be honest, if he was not a macular specialist I wouldn't blame him for dx'ing you with this. I honestly feel like the luckiest person alive right now. I was accepting many facts before my appt. I was coming to terms with everything.

Me and my wife celebrated this evening with friends with a beautiful dinner in NYC.

And I leave you with this........DARR....my Irish friend, this is the American cover (NYC and Boston) OF YOUR SONG (we used to rock out to this ONLY for special occasions). Hope you like this version.
http://www.youtube.com/watch?v=qw-1O_wB ... re=related


P.S. - I will update you all on my follow-up in ealry July since BFS may be playing a part.

LATAZ!!!!!!!!!!!!


Huh?

Re: meet ups

PostPosted: April 7th, 2011, 1:15 am
by johnnythejet
Okay Robbie. So you PM'd me quite a hateful message and you have disabled PM receipt so I can only respond here....
1. I don't know or care about drama you have had with other members. I'm not them. Nor am I ANYONE'S minion except for maybe the Lords.
2. Nobody told me to "block you" just because I created a post after yours.
3. I'm a legit member of this community who has done nothing but come for help when I was in my nightmare and give help to others now that I'm out.
4. As a legit member I have every right to post up on the forum with a question, and my post is just as important as yours.
5. Also as a legit member I don't deserve being thrown profanity my way via PM for no reason.
6. For someone who is rightfully very happy due to some great news about their health, you have a strange way of showing it.
7. Congrats on the news. That is a big relief I'm sure.

That's all for that, but hopefully this won't deter others from responding to the original intent of this post.

Thanks,
John

That is all.

Re: meet ups

PostPosted: April 7th, 2011, 10:27 am
by RandyR
johnnythejet wrote:Okay Robbie. So you PM'd me quite a hateful message and you have disabled PM receipt so I can only respond here....
1. I don't know or care about drama you have had with other members. I'm not them. Nor am I ANYONE'S minion except for maybe the Lords.
2. Nobody told me to "block you" just because I created a post after yours.
3. I'm a legit member of this community who has done nothing but come for help when I was in my nightmare and give help to others now that I'm out.
4. As a legit member I have every right to post up on the forum with a question, and my post is just as important as yours.
5. Also as a legit member I don't deserve being thrown profanity my way via PM for no reason.
6. For someone who is rightfully very happy due to some great news about their health, you have a strange way of showing it.
7. Congrats on the news. That is a big relief I'm sure.

That's all for that, but hopefully this won't deter others from responding to the original intent of this post.

Thanks,
John

That is all.



I would love to do a meet and greet some time, it would be great to meet some of the good folks on here. God Bless

Randy

Re: meet ups

PostPosted: April 7th, 2011, 1:06 pm
by zenseo
I like the idea of meeting up. After almost seven years, I have never met anyone else who deals with this ever annoying syndrome—although I would wish it on no one. Back in my early days of AboutBFS, in 2005 I think, there was talk amongst some members about meeting up, though I am not sure if it ever happened.

Re: meet ups

PostPosted: April 7th, 2011, 1:38 pm
by ImOK
You should meet here: http://www.bfsrestaurant.com/ they even have an aboutbfs link
:lol:

Re: meet ups

PostPosted: April 7th, 2011, 2:44 pm
by johnnythejet
ImOK wrote:You should meet here: http://www.bfsrestaurant.com/ they even have an aboutbfs link
:lol:

Haha, that would be hilarious.

Re: meet ups

PostPosted: April 7th, 2011, 9:18 pm
by twin2
Man, I would love to meet a group of BFSers! We should have a convention, invite neuros, do EMGs on the spot. You know--all the fun stuff we love :lol:

Re: meet ups

PostPosted: January 2nd, 2012, 3:34 pm
by chicagobfs
An Old Topic, did you actually meet?:)

Re: meet ups

PostPosted: January 2nd, 2012, 5:01 pm
by johnnythejet
I have yet to meet anyone.
Although, funny you should ask because I'm meeting up with a couple BFSers from the Boston area this Wednesday while traveling for work. :)

Re: meet ups

PostPosted: January 2nd, 2012, 9:46 pm
by tiggida
lucky Johnny...let me know if anyone will be in the california area, I would love to meet someone with this :D

Re: meet ups

PostPosted: January 2nd, 2012, 10:28 pm
by chicagobfs
Same here if anyone in Chicago :)

Re: meet ups

PostPosted: January 2nd, 2012, 10:38 pm
by bobajojo
I'm one of the ones meeting up with Johnny on Weds. Looking forward to it. Theres another person on this board from Boston and I met her out a few weeks ago. If you can find someone in your area, I highly recommend meeting them out. Its great to meet someone in person who fully understands this madness. -Matt