Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 In a message dated 2/17/04 10:02:43 PM Eastern Standard Time, pmelcher@... writes: << But, if you are comfortable with your primary and her recommendations, then that is what is important. Go with your gut feelings. >> I'm going to be blunt here Betty......your primary is not going to do surgery on you if the issue ever arises. Your primary means well, and sounds very supportive, but still may not have enough information. I thought your son did have a positive skin biopsy or tissue testign, and you were waiting for the DNA results? And you have it too? If you are only awaiting the second part of the test, which entails finding the specific mutation, it is not the " final' result, just the second part after you have been confirmed. If you truly do not know either way, then you could wait, but you should consider no matter what the result is your son passed away from a vascular event, just this alone should require you to be monitored if they truly believe it came from you. I hope this helps. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 In a message dated 2/18/04 8:07:16 AM Eastern Standard Time, aase.m@... writes: << There are some moms who are regulars at the conferences who would be so great for you to meet and get to know... >> Here, here, I agree! Hugs, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 In a message dated 2/18/04 11:06:15 AM Eastern Standard Time, tabby2@... writes: << " the findings were compatible with EDS Type IV " >> That means you have it....now they are only trying to isolate the specific mutation.....with me it took about six months. You hang in there. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Hi Betty (do I remember the right name now?) and Sue, First of all Betty, I am so sorry to hear about your son passing away... Sue, I was thinking exactly as you did when I read Betty's post... I wasn't sure if I should post, not having VEDS... But I'll give it a go anyway... I am really lucky in that I don't have HEDS myself. But after getting to know some people with VEDS and reading about it over the years since I first got " here " in 1997, I have become totally convinced that monitoring, preparation and planning is the only way to go when you know about having it. I think it is pretty logical too... If something suddenly happens, and you and your right specialists have been preparing for it, they are much better equipped to help you. Also, if something should arise, they can even help before something acute arises, which just have to be much better than doing things when a person is rushed in acutely.... It just makes so much more sense... And even if you may have a wonderful GP, a GP is not the right person for such issues, I think... If it was me, and you really are diagnosed/they think it came from you, I would have asked for a referral to a vascular specialist now... Much better to do it now than when you have a specific need... Then you and the doc can use time to get to know each other too, and start a good communication and cooperation. That is so important for people with chronic health issues, but even more important when it is a rare condition... Also.. Betty... Do you plan on going to the conference this summer? I hope you can make it there. It is a fantastic experience which is impossible to describe in words. You have to experience it... There you would get the opportunity to meet others in your situation as a mom who lost your precious child because of VEDS... There are some moms who are regulars at the conferences who would be so great for you to meet and get to know... Aase Marit >In a message dated 2/17/04 10:02:43 PM Eastern Standard Time >pmelcher@... writes: > ><< But, if you are comfortable with your primary and her recommendations, >then that is what is important. Go with your gut feelings. >> > >I'm going to be blunt here Betty......your primary is not going to do surgery >on you if the issue ever arises. Your primary means well, and sounds very >supportive, but still may not have enough information. > >I thought your son did have a positive skin biopsy or tissue testign, and you >were waiting for the DNA results? And you have it too? If you are only >awaiting the second part of the test, which entails finding the >specific mutation, >it is not the " final' result, just the second part after you have been >confirmed. If you truly do not know either way, then you could wait, but you >should consider no matter what the result is your son passed away >from a vascular >event, just this alone should require you to be monitored if they >truly believe >it came from you. I hope this helps. > >Hugs, >Sue > > > >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 18, 2004 Report Share Posted February 18, 2004 Sue In response...no my son did not have a skin biopsy, only me...which their first report read and I quote " the findings were compatible with EDS Type IV " then further testing is being done to islolate the gene and they were also going to do DNA tests on my sons blood (I heard 2 different things regarding whether or not they had tissue to do their tests. Still I do question what a vascular doctor can do and also when it comes right down to it ...it would likely be an emergent situation...what are my chances that that particular doctor could be called in at that time.?? Please know that I am not in any way saying I disagree with you but I also have to have some trust in my doctor. She is also getting a letter as I said before outlining my medical history which will be on file at our hospital and of course I will carry a copy with me. Perhaps after I hear back from Dr. byers the internist whom I had recently seen will then want me to see a vascular doc. Right now my head is swimming with what & what not to do. Ijust started this antidepressant today so I hope that will help this tornado in my brain. As always thanks for your insight. Betty Re: Question?? > In a message dated 2/17/04 10:02:43 PM Eastern Standard Time, > pmelcher@... writes: > > << But, if you are comfortable with your primary and her recommendations, > then that is what is important. Go with your gut feelings. >> > > I'm going to be blunt here Betty......your primary is not going to do surgery > on you if the issue ever arises. Your primary means well, and sounds very > supportive, but still may not have enough information. > > I thought your son did have a positive skin biopsy or tissue testign, and you > were waiting for the DNA results? And you have it too? If you are only > awaiting the second part of the test, which entails finding the specific mutation, > it is not the " final' result, just the second part after you have been > confirmed. If you truly do not know either way, then you could wait, but you > should consider no matter what the result is your son passed away from a vascular > event, just this alone should require you to be monitored if they truly believe > it came from you. I hope this helps. > > Hugs, > Sue > > > > 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 18, 2004 Report Share Posted February 18, 2004 Aase Thanks for you response. This has given me much food for thought regarding the vascular doc. I am awaitingsome genetic testing and after I get those results I will speak with the genetecist & internist and see what their take is on the vascular issue. As I said to someone else you can imagine what it has been like for us ...it has only been 8 months since our son died and sealing now with this diagnosis ..I am totally in a tailspin at atimes. Unfortunately I will not be able to attend the conference. We live in Western Canada and although we are planning a trip to SOuthern Ontario to our cottage this summer it will not be near the conference dates and we are already going on another trip to Florida in May, so its not feasible right now although it sounds like it will be very informative. Thanks again Betty Re: Question?? > Hi Betty (do I remember the right name now?) and Sue, > > > First of all Betty, I am so sorry to hear about your son passing away... > > Sue, I was thinking exactly as you did when I read Betty's post... > > I wasn't sure if I should post, not having VEDS... But I'll give it a > go anyway... I am really lucky in that I don't have HEDS myself. But > after getting to know some people with VEDS and reading about it over > the years since I first got " here " in 1997, I have become totally > convinced that monitoring, preparation and planning is the only way > to go when you know about having it. > > I think it is pretty logical too... If something suddenly happens, > and you and your right specialists have been preparing for it, they > are much better equipped to help you. Also, if something should > arise, they can even help before something acute arises, which just > have to be much better than doing things when a person is rushed in > acutely.... It just makes so much more sense... > > And even if you may have a wonderful GP, a GP is not the right person > for such issues, I think... If it was me, and you really are > diagnosed/they think it came from you, I would have asked for a > referral to a vascular specialist now... Much better to do it now > than when you have a specific need... Then you and the doc can use > time to get to know each other too, and start a good communication > and cooperation. That is so important for people with chronic health > issues, but even more important when it is a rare condition... > > Also.. Betty... Do you plan on going to the conference this summer? I > hope you can make it there. It is a fantastic experience which is > impossible to describe in words. You have to experience it... There > you would get the opportunity to meet others in your situation as a > mom who lost your precious child because of VEDS... There are some > moms who are regulars at the conferences who would be so great for > you to meet and get to know... > > > > Aase Marit > > > >In a message dated 2/17/04 10:02:43 PM Eastern Standard Time > >pmelcher@... writes: > > > ><< But, if you are comfortable with your primary and her recommendations, > >then that is what is important. Go with your gut feelings. >> > > > >I'm going to be blunt here Betty......your primary is not going to do surgery > >on you if the issue ever arises. Your primary means well, and sounds very > >supportive, but still may not have enough information. > > > >I thought your son did have a positive skin biopsy or tissue testign, and you > >were waiting for the DNA results? And you have it too? If you are only > >awaiting the second part of the test, which entails finding the > >specific mutation, > >it is not the " final' result, just the second part after you have been > >confirmed. If you truly do not know either way, then you could wait, but you > >should consider no matter what the result is your son passed away > >from a vascular > >event, just this alone should require you to be monitored if they > >truly believe > >it came from you. I hope this helps. > > > >Hugs, > >Sue > > > > > > > >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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