Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Hi, I'm new to the group. I haven't been diagnosed with EDS yet, but I meet a great deal of the criteria for HEDS (including Beighton score of 9, I meet both major and a couple more minor criteria on the Brighton scale, at least 13 knee dislocations, shoulder seperations, scoliosis, neurally mediated syncope, TMJ issues, chronic pain, chronic tiredness/fatigue, unresponsive to anasthesia, etc.) and am pursuing a diagnosis. When I met with my primary care physician and told him my symptoms and that I thought I had HEDS, he didn't bat an eye and asked what I needed from him (how refreshing is that?!), so I asked for a referral for a rheumatologist. I've just received my authorization and now am waiting for the nurse to call me back with an appointment. Anyway, I'm wonering if any of the 400+ members of this group are in Southern California and have worked with any good rheumys or geneticists (or other specialists) in the area. I'm in the Los Angeles area and was referred to Dr. Kline in Torrance (but I know nothing about him or his experience with EDS). Unfortunately, my insurance plan doesn't include UCLA, but I may be able to change my coverage next January if necessary. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Welcome to the family ! I am glad that you're here! I have a huge list of doctors in California to share with you and will send them to you privately! Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Welcome to the family ! I am glad that you're here! I have a huge list of doctors in California to share with you and will send them to you privately! Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Welcome to the family ! I am glad that you're here! I have a huge list of doctors in California to share with you and will send them to you privately! Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Hi , I'm not in California, so I have no advice for you, but I wanted to welcome you to our family! It sounds like you will fit right in! Sad that you fit in diagnosis-wise, but we're glad to have you here. I'm sure you will get lots of information and support from everyone here. They truly are a family, and I don't know what I'd do without them! I hope to hear more from you soon. Good luck with the rheumatologist. Keep your expectations at a reasonable level, OK? Do you take any medications now? Love Lana HEDS Omaha, NE age 53 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Hi , I'm not in California, so I have no advice for you, but I wanted to welcome you to our family! It sounds like you will fit right in! Sad that you fit in diagnosis-wise, but we're glad to have you here. I'm sure you will get lots of information and support from everyone here. They truly are a family, and I don't know what I'd do without them! I hope to hear more from you soon. Good luck with the rheumatologist. Keep your expectations at a reasonable level, OK? Do you take any medications now? Love Lana HEDS Omaha, NE age 53 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 I take atenelol for the syncope (a god-send for me, although I think I need to increase my dosage a bit as I am becoming symptomatic again) and I was taking Vioxx after a particularly bad ankle injury 3 years ago, but I recently stopped takig it because I wasn't noticing much relief anymore and I was worried about the long term side effects. I also take glucosomine and chondroitin (spelling?). I take Tylenol as needed when the chronic pain gets beyond my tolerance level. If there was something that would totally get rid of my pain, I'd do it in a heartbeat, but since most meds only allieviate it a little or leave me completely knocked out, I prefer not to take anything long term. I seem to adjust to meds (especially pain meds) and they don't work well for me after a while, even if it has been a long time since I lat took it. Even vicodin doesn't work as well any more... I used to get knocked out for hours after a half tablet, but after my last surgery, I'd pop one every 4 hours and could still function well enought to do crossword puzzles, etc. My pain is still managable for me, but I am starting to come to terms with the fact that I am fighting a losing battle with the pain and am preparing myself for needing stronger meds on a regular basis. Thanks for the warning to keep my expectations at a reasonable level. I need to keep in mind that many of you had to seek multiple opinions before diagnosis and I may not be happy with what the rheumatologist has to say. I won't be holding my breath, but I will be keeping my fingers crossed. > > I hope to hear more from you soon. Good luck with the > rheumatologist. Keep your expectations at a reasonable level, OK? Do > you take any medications now? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 I take atenelol for the syncope (a god-send for me, although I think I need to increase my dosage a bit as I am becoming symptomatic again) and I was taking Vioxx after a particularly bad ankle injury 3 years ago, but I recently stopped takig it because I wasn't noticing much relief anymore and I was worried about the long term side effects. I also take glucosomine and chondroitin (spelling?). I take Tylenol as needed when the chronic pain gets beyond my tolerance level. If there was something that would totally get rid of my pain, I'd do it in a heartbeat, but since most meds only allieviate it a little or leave me completely knocked out, I prefer not to take anything long term. I seem to adjust to meds (especially pain meds) and they don't work well for me after a while, even if it has been a long time since I lat took it. Even vicodin doesn't work as well any more... I used to get knocked out for hours after a half tablet, but after my last surgery, I'd pop one every 4 hours and could still function well enought to do crossword puzzles, etc. My pain is still managable for me, but I am starting to come to terms with the fact that I am fighting a losing battle with the pain and am preparing myself for needing stronger meds on a regular basis. Thanks for the warning to keep my expectations at a reasonable level. I need to keep in mind that many of you had to seek multiple opinions before diagnosis and I may not be happy with what the rheumatologist has to say. I won't be holding my breath, but I will be keeping my fingers crossed. > > I hope to hear more from you soon. Good luck with the > rheumatologist. Keep your expectations at a reasonable level, OK? Do > you take any medications now? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 , do you work or stay at home? Have young children at home? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 , do you work or stay at home? Have young children at home? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 , do you work or stay at home? Have young children at home? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Welcome to our family. Sometimes the toughest thing it not knowing exactly what is wrong with you. Getting diagnosed for me was a good and bad thing, i finally had a name for the pain and dislocations, but i found out there really was nothing to do to help. I am on pain meds to help with the pain and trying light physical therapy because i would like to gain some of the strength i had lost. You may want to take some articles with you to the Rhumy, incase he is not completely familiar with EDS. Highlight the things that apply to you so he can get a better understanding. The Rhumy who diagnosed me knew just enough to diagnose me but not to treat me. When the nurse calls to schedule an appointment you may want to ask her if she could ask him if he is familar with EDS. Good luck and let us know how it goes. Hugs, Jen EDS III Phoenix, AZ > > > > I hope to hear more from you soon. Good luck with the > > rheumatologist. Keep your expectations at a reasonable level, OK? > Do > > you take any medications now? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Welcome to our family. Sometimes the toughest thing it not knowing exactly what is wrong with you. Getting diagnosed for me was a good and bad thing, i finally had a name for the pain and dislocations, but i found out there really was nothing to do to help. I am on pain meds to help with the pain and trying light physical therapy because i would like to gain some of the strength i had lost. You may want to take some articles with you to the Rhumy, incase he is not completely familiar with EDS. Highlight the things that apply to you so he can get a better understanding. The Rhumy who diagnosed me knew just enough to diagnose me but not to treat me. When the nurse calls to schedule an appointment you may want to ask her if she could ask him if he is familar with EDS. Good luck and let us know how it goes. Hugs, Jen EDS III Phoenix, AZ > > > > I hope to hear more from you soon. Good luck with the > > rheumatologist. Keep your expectations at a reasonable level, OK? > Do > > you take any medications now? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Welcome to our family. Sometimes the toughest thing it not knowing exactly what is wrong with you. Getting diagnosed for me was a good and bad thing, i finally had a name for the pain and dislocations, but i found out there really was nothing to do to help. I am on pain meds to help with the pain and trying light physical therapy because i would like to gain some of the strength i had lost. You may want to take some articles with you to the Rhumy, incase he is not completely familiar with EDS. Highlight the things that apply to you so he can get a better understanding. The Rhumy who diagnosed me knew just enough to diagnose me but not to treat me. When the nurse calls to schedule an appointment you may want to ask her if she could ask him if he is familar with EDS. Good luck and let us know how it goes. Hugs, Jen EDS III Phoenix, AZ > > > > I hope to hear more from you soon. Good luck with the > > rheumatologist. Keep your expectations at a reasonable level, OK? > Do > > you take any medications now? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Lana - I work full time as a speech therapist in an elementary school. I work with individual students or small groups of kids (my largest group right now is 4 students). I am able to sit for most of the day but also have the flexibility to get up and move around my office between groups of kids every 25-30 minutes. Plus, if I'm really achy I can fidget during a group. I've been able to do my job when I had my left arm in a sling and my right ankle elevated in a chair next to me. If I had been a regular classroom teacher, I think I would be in serious trouble with all the standing and would need to make serious modifications. As for your other question, I don't have any children, and I don't see how I would make it through the pregnancy, let alone chasing toddlers. Fortunately, though, my husband and I don't plan on having children. We do have a dog, though. :-) She can be enough trouble! But, the best thing about her is that she is an English Bulldog, which means she is lazy, so I don't have to worry about taking her on long walks or having her jump up on me and hurt me! Jen - I actually went armed to my primary care Dr with printed out articles as well as the Beighton and Brighton criteria all highlighted. He glanced at the criteria sheets adn I didnt bother to show him the others (linking syncope, fatigue, and anasthesia effects to HEDS and HMS) since he was willing to refer me to the rheumatologist. But, I plan to bring the same articles to show the rheumy. I figure if nothing else, it helps show that I have some idea what I'm talking about and I find the doctors tend to treat patients who have done a little research with more respect. And with documentation, I feel less like a hypochondriac. I was also planning to check withthe nurse about his experience with EDS, but I haven't gotten the return call yet. It is nice to hear that I seem to be taking some of the right steps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Lana - I work full time as a speech therapist in an elementary school. I work with individual students or small groups of kids (my largest group right now is 4 students). I am able to sit for most of the day but also have the flexibility to get up and move around my office between groups of kids every 25-30 minutes. Plus, if I'm really achy I can fidget during a group. I've been able to do my job when I had my left arm in a sling and my right ankle elevated in a chair next to me. If I had been a regular classroom teacher, I think I would be in serious trouble with all the standing and would need to make serious modifications. As for your other question, I don't have any children, and I don't see how I would make it through the pregnancy, let alone chasing toddlers. Fortunately, though, my husband and I don't plan on having children. We do have a dog, though. :-) She can be enough trouble! But, the best thing about her is that she is an English Bulldog, which means she is lazy, so I don't have to worry about taking her on long walks or having her jump up on me and hurt me! Jen - I actually went armed to my primary care Dr with printed out articles as well as the Beighton and Brighton criteria all highlighted. He glanced at the criteria sheets adn I didnt bother to show him the others (linking syncope, fatigue, and anasthesia effects to HEDS and HMS) since he was willing to refer me to the rheumatologist. But, I plan to bring the same articles to show the rheumy. I figure if nothing else, it helps show that I have some idea what I'm talking about and I find the doctors tend to treat patients who have done a little research with more respect. And with documentation, I feel less like a hypochondriac. I was also planning to check withthe nurse about his experience with EDS, but I haven't gotten the return call yet. It is nice to hear that I seem to be taking some of the right steps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2004 Report Share Posted March 4, 2004 Hi , Welcome to the group, My name is son. This is a wonderful, loving and fun group. So much knowledge and true friendship amongst our family. Everyone truely cares for one another and is always here to help or listen! Once again Welcome! Sincerely, S. Newbie in California > Hi, > > I'm new to the group. I haven't been diagnosed with EDS yet, but I > meet a great deal of the criteria for HEDS (including Beighton score > of 9, I meet both major and a couple more minor criteria on the > Brighton scale, at least 13 knee dislocations, shoulder seperations, > scoliosis, neurally mediated syncope, TMJ issues, chronic pain, > chronic tiredness/fatigue, unresponsive to anasthesia, etc.) and am > pursuing a diagnosis. When I met with my primary care physician and > told him my symptoms and that I thought I had HEDS, he didn't bat an > eye and asked what I needed from him (how refreshing is that?!), so I > asked for a referral for a rheumatologist. I've just received my > authorization and now am waiting for the nurse to call me back with > an appointment. > > Anyway, I'm wonering if any of the 400+ members of this group are in > Southern California and have worked with any good rheumys or > geneticists (or other specialists) in the area. I'm in the Los > Angeles area and was referred to Dr. Kline in Torrance (but I know > nothing about him or his experience with EDS). Unfortunately, my > insurance plan doesn't include UCLA, but I may be able to change my > coverage next January if necessary. > > Thanks, > > > > > To learn more about EDS, visit our website: http://www.ceda.ca > > Quote Link to comment Share on other sites More sharing options...
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