Guest guest Posted June 5, 2000 Report Share Posted June 5, 2000 , cannot thank you enough for putting all this info in print for new members. Copying for Jana. Patsy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2000 Report Share Posted June 6, 2000 Hey , Wow! That is a lot more people than I thought! I read that there were less than 5000 people in the world that have been diagnosed with RP since the very first case in 1923(?) and that is why it was so rare. Of course, if there isn't much interest out there to research the great disease, it would be difficult to get more accurate numbers. Thanks for the info! Love and blessings, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2000 Report Share Posted June 6, 2000 Lucy, Just a question for you. Have you ever lived in any other state? Just wondering. How are you feeling. Did you ever talk to a doctor about fibromyalgia? Seems like everyone I talk to with fibro is in a flare right now. Don't know why. Go figure!!! Hope you are doing okay. Thinking of you always. Love Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2000 Report Share Posted June 6, 2000 Hi , Lucy here. I am buttin in again. I may have mentioned that I am the only patient at the ENT Clinic here in my town. I am also the only one on the group from the state of NC. Of course, I know that there are a lot of people out there who have not been diagnosed yet. So, for now, there are not very many people in NC who has RP. Love and Prayers, Lucy Mlier325@... wrote: > Hey , Wow! That is a lot more people than I thought! I read that there > were less than 5000 people in the world that have been diagnosed with RP > since the very first case in 1923(?) and that is why it was so rare. Of > course, if there isn't much interest out there to research the great disease, > it would be difficult to get more accurate numbers. Thanks for the info! > Love and blessings, > > > ------------------------------------------------------------------------ > Old school buds here: > http://click./1/4057/1/_/32049/_/960327204/ > ------------------------------------------------------------------------ > > hi and welcome. maybe we can come up with answers that our doctors can't Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2000 Report Share Posted June 6, 2000 Hi , Just got your post. Strange you would ask! I just saw my PA at ENT Clinic and was told to go back on my Prednisone and also to take additional calcium with the Med. called Actonel to prevent Osteoprosis. I did get a prescription for a scooter from my GP. Now, I hope my insc. company will approve the " Rascal " for me. Both of my ears are flaring, that is why I went to my ENT. I kinda felt like he would put me back on the big " P " word!! Love and Prayers to you , I have been thinking about you too! You take care!!!! RCColloran@... wrote: > Lucy, Just a question for you. Have you ever lived in any other state? Just > wondering. How are you feeling. Did you ever talk to a doctor about > fibromyalgia? Seems like everyone I talk to with fibro is in a flare right > now. Don't know why. Go figure!!! Hope you are doing okay. Thinking of you > always. > > Love > > ------------------------------------------------------------------------ > Old school buds here: > http://click./1/4057/1/_/32049/_/960341995/ > ------------------------------------------------------------------------ > > hi and welcome. maybe we can come up with answers that our doctors can't Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2000 Report Share Posted June 7, 2000 Hey Lucy, no problem...... all input is welcome. When I was first diagnosed, I was told that I was the only person in Oklahoma that had RP, then I found out that there was a woman in Broken Arrow, and a year later, Don (Heidi's better half LOL) made 3. Now there is Jana from Sayre, making 4 in OK. I wonder how it is determined how many RPers in each state or country. Do the docs report it to NORD or RARE or the medical research foundation for each state and then to some national level? God only knows -- it is unfortunate there are so many others being diagnosed recently, but maybe it will help as far as getting some major research going, and people will stop looking at us like we're aliens or something! Hey, there's an idea......... maybe we were all abducted and exposed to an alien disease LOL! Sounds good to me : ) Love and Blessings, in OK : ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2000 Report Share Posted June 7, 2000 Hi , I just found out the other night that Bill who just posted is from Wilmington, NC!! That makes 2 known in NC. There are probably more who have been diagnosed and just don't have internet access. Wish more people could be accurately diagnosed early on into the disease! That is also where the research comes in. Love and Prayers, Lucy Mlier325@... wrote: > Hey Lucy, no problem...... all input is welcome. When I was first diagnosed, > I was told that I was the only person in Oklahoma that had RP, then I found > out that there was a woman in Broken Arrow, and a year later, Don (Heidi's > better half LOL) made 3. Now there is Jana from Sayre, making 4 in OK. > I wonder how it is determined how many RPers in each state or country. Do > the docs report it to NORD or RARE or the medical research foundation for > each state and then to some national level? God only knows -- it is > unfortunate there are so many others being diagnosed recently, but maybe it > will help as far as getting some major research going, and people will stop > looking at us like we're aliens or something! Hey, there's an idea......... > maybe we were all abducted and exposed to an alien disease LOL! Sounds good > to me : ) > Love and Blessings, > in OK : ) > > ------------------------------------------------------------------------ > eGroups members: $60 in FREE calls! Join beMANY! > And pay less each month for long distance. > http://click./1/4122/1/_/32049/_/960401186/ > ------------------------------------------------------------------------ > > hi and welcome. maybe we can come up with answers that our doctors can't Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2000 Report Share Posted June 8, 2000 In a message dated 6/7/2000 11:07:22 AM Pacific Daylight Time, Mlier325@... writes: << Hey, there's an idea......... maybe we were all abducted and exposed to an alien disease >> I think you may be onto something here. Seems like this came up once before when we were trying to figure out. LOL Roy Quote Link to comment Share on other sites More sharing options...
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