Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 Hi , Sometimes just having an answer is a lot of help - it was with my husband, anyway. By the way, he has Narcolepsy and Restless let. Which sleep disorder to you think you have? I guess you and the girls will just need to remember to treat yourselves like china dolls! You're as precious as they are, right?? Did he give any reasons for all the bleeds?? That is you, isn't it, that has problems with that? Will just the extra vitamin C handle that?? Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 It must be just relief to get an answer. Now if only I would hear back from Dr. Byers.... its been 3 months and I'll be calling my genetecist if I don't hear soon. We are waiting for our final test results. Anyway keep well. Betty Saw Dr Byers today > Well, just back from seeing Dr Byers. > > He said we have EDS hypermobile type. > > He was very nice. The girls and I liked him. Very easy to talk with, and told us some funny stories. > Yes, I lked him very much. > > He looks so much like my father, it was creepy! We kept getting freaked out. I mean - it was uncanny! Just like my dad - 20 years ago. I've never met anyone who resembled someone so perfectly before. > > So, all he could advise was to take vitamin C,and do strength training with very light weights (yea, right!) > > He also is telling my dr to send me to a sleep disorder clinic. He thinks I have a sleep disorder. I thought that was a possibility for quite a while now. My dad thinks I have that too. > > He says there are no signs of the vascular type. 's pneumothoraxes were a separate thing. So, that's good news. A relief! > > Anyway, he said there is some research being done (although it's lagging a bit right now) about why some people with hypermobility have pain, and some don't. He's suppose to send me any info on that. They may even call us to participate in a study. > > So, now I'm hurting more after that exam. So, I'm going go lay down, and try to feel relieved that I at least have an answer - something to " blame " all our problems on. lol > Not that it does anything. Not that it makes anything better. But, at least we know. And, at least It all has a name now. > > Hugs, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 Betty, can you call Pippen, his assistant to see if there are any results?? Just a thought! Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 Hi Lana I don't even know where they are located or their numbers. I am in Canada (Alberta) and the testing was all done through my genetecist but thanks for the thought. Betty Re: Saw Dr Byers today > Betty, can you call Pippen, his assistant to see if there are > any results?? Just a thought! > > Love Lana > > > > > To learn more about EDS, visit our website: http://www.ceda.ca > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 Betty, I probably have it somewhere at home. I'll see if I can find it for you. Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 Yup, you're right, , it is Jo. I think you both joined the list around the same time or something...I sometimes get confused...DUH!!!! Dang, and I don't really have a good excuse either! Sorry ! Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 Thanks , for doing that - I got busy, and just now got on the computer - 10:30 or so. Yipes, I have over 100 emails to read! Looks like I'll be getting to bed late again! LOL! Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 No, it wasn't me who has the bleeds. I think it's Jo. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 You should call his assistant. She's lovely. Very nice woman. I'm sure she can give you some info on when those tests will be done. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 Hi, I can give you their number. Should I do that off board? Just e-mail me privately. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 I guess it doesn't matter if I post Dr Byer's number here, since I found it on the internet. It's - fax - adress is- 1959 N.E. Pacific Street Medical Genetics, Box 357720 Seattle, Wa 98195-7720 There's , and the program coordinator is Debbie Olson. Just call them. They are all very nice. Quote Link to comment Share on other sites More sharing options...
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