essie
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Posted by: essie ® 06/22/2003, 19:37:06 Author Profile Mail author

Hi Board I have my new doctors appointment today, so fingers crossed. I am taking a friend with me in case I forget to mention something and also so she can confirm that this "thing" has been getting worse over the last year. You all sound lovely but I have noticed the majority of folks here seem to be 50's and 60's I am 40, can beb come on in your 40's?. I read an article that said "rose tinted" sunglasses can bring more relief to some suffers than the traditional black. I gave it a try and it worked for a little while (everything works for a little while). Alternating between different coloured lenses every half hour or so seem seems to bring some relief, anyone else tried that?. Thankyou June for your advice about a movement disorder clinic but I live in a australian country town so I think too much travel would be involved. cheers to all..essie

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Re: essie
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Posted by: Lynn Yarbrough ® 06/23/2003, 12:43:08 Author Profile Mail author

>I have noticed the majority of folks here seem to be 50's and 60's I am 40, can beb come on in your 40's?. < Your observation is correct, most of us start the condition somewhat late in life. However, I started symptoms at about 30 and we have heard from individuals who started even earlier. Many people have been misdiagnosed several times so we join this forum later than one might expect. I had the condition for 30 years before I got a good diagnosis. --- Lynn

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Re: essie
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Posted by: June in Toronto ® 06/23/2003, 18:32:24 Author Profile Mail author

Hi Essie, I didn't realise you were in Australia! Anyway I know a man who is in his early 30's who has beb - also Kelly (who used to post on this board) is of a similar age. So, although a lot of us are older, it can and does hit people younger, sorry to say. I've had my regular 3-level glasses tinted green at the top as it was suggested in a BEBRF newsletter by a doctor that this colour might be useful to us - I'm still undecided on it. I use brownish/amber-tints for watching tv and others I know have the rose-coloured ones in various shades. I have a conglomeration of glasses basically and find, like you, that sometimes they work, sometimes they don't - its all trial and error. Best wishes. June in Toronto who iswondering what has happened to Kelly -I miss her posts about her 2 girls

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Re: Re: essie -- June in Toronto		Top of Thread	Archive

Posted by: rennie ® 06/23/2003, 22:09:58 Author Profile Mail author

Hi June This is Irene that is true I've missed chatting with Kelly .She was the very first person who interdued me to the Support group online for the BEB. Yes she is very young lady with a great career and ended giving it up because of her illness. And right after that chatted with Shirley and June many times. Before I knew that I was the only one with this ugly disorder. And still kept in touch about the time that the support online wasn't working I made contact with her but wasn't sure what was going on with the support group.And that was the last I heard from her. God Bless her and her family. Take care June and all of your love ones. Irene

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Re: ANYBODY KNOW WHAT HAPPENED TO KELLY?
Re: Re: June -- rennie		Top of Thread	Archive

Posted by: June in Toronto ® 06/24/2003, 10:35:35 Author Profile Mail author

Yes, Irene, Kelly is very young to get beb and had to give up her CPA career because of it. She has 2 young daughters and a loving husband and was put all her energy and any eye-opening time (:-)) into them as a stay-at-home Mum. I wonder why she hasn't posted at least since this faithful bb went down for a while. Anybody know? Keep your chin up Irene (I'm keeping up both of mine:-)) - YOU TAKE CARE June in Toronto Modified by June in Toronto at Tue, Jun 24, 2003, 10:42:13

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ESSIE
Re: Re: ANYBODY KNOW WHAT HAPPENED TO KELLY? -- June in Toronto		Top of Thread	Archive

Posted by: Keith_P ® 06/27/2003, 09:37:45 Author Profile Mail author

Hi all! I have BEB and I am 34! I got it when I was 33.I have it only in the right eye.(Its not hemefacial I have been checked for that) My case thank the Lord is mild. Occurrs during stress and anxiety and is stimulated only during social contact. It hasn't gotten much worse in the year and half I have had it. Its gotten a little better actually. Klonapin has been a wonder drug that I take when I teach or do anything that would require it! Hang in there, hope is out there! Modified by Keith_P at Fri, Jun 27, 2003, 09:39:25

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Re: ANYBODY KNOW WHAT HAPPENED TO KELLY?
Re: Re: ANYBODY KNOW WHAT HAPPENED TO KELLY? -- June in Toronto		Top of Thread	Archive

Posted by: Sally - in - Idaho ® 07/01/2003, 00:40:19 Author Profile Mail author

I've heard from Kelly. She's doing about the same as before. Busy with the family and looking forward to a vacation. Says she misses everyone on the BB, but it's just too much for her eyes to handle right now. Sally in North Idaho where our heat wave broke today and it's lovely.

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