Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 Hi Mark, Good to hear from you! I am so sorry that you have experienced this, but grateful that this last episode was in the presence of your doctor. I hope you are improving! I have some literature that I will send you privately. You should contact the geneticist who diagnosed your EDS to further elaborate to the rest of the medical world involved in your care, how EDS 'works'. Coming from someone who diagnoses it will carry a great deal of water! Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 Hi Jill Good to hear from you, too! I feel like a freeloader, dropping in whenever I need support but never having the enegry to give as much as I get. You & this list is a bless for me. I'm always grateful you both are here. I was never diagnosed by a geneticist but a Rheumy. He consulted with my doctor a few years ago when I was hospitalized. He came in, play around with my joints, looked at my scars, pulled at my skin then said, " yeap, you have Ehlers-Danlos type II. " When I asked what can be done, he said that there was no treatment & just be happy that I didn't have the vascular type that kills you. Do you think I should also see a geneticist? Peace Mark ------------------------- Undrape! you are not guilty to me, nor stale nor discarded, I see through the broadcloth and gingham whether or no, And am around, tenacious, acquisitive, tireless, and cannot be shaken away. --Walt Whitman-- Re: EDS & TIA's info > Hi Mark, > > Good to hear from you! > > I am so sorry that you have experienced this, but grateful that this last > episode was in the presence of your doctor. I hope you are improving! > > I have some literature that I will send you privately. You should contact > the geneticist who diagnosed your EDS to further elaborate to the rest of > the medical world involved in your care, how EDS 'works'. Coming from > someone who diagnoses it will carry a great deal of water! > > Jill > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 You are never a freeloader! It may be worth seeing a geneticist mark, where are you located again? Perhaps there is a geneticist on our doctors list that you can see. Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 here's a real off-topic question, Mark. Any chance your email addy (brillig01@...) is a reference to Jabberwocky? Louise > Re: EDS & TIA's info > > > Hi Jill > > Good to hear from you, too! I feel like a freeloader, dropping > in whenever > I need support but never having the enegry to give as much as I > get. You & > this list is a bless for me. I'm always grateful you both are here. > > I was never diagnosed by a geneticist but a Rheumy. He consulted with my > doctor a few years ago when I was hospitalized. He came in, play around > with my joints, looked at my scars, pulled at my skin then said, > " yeap, you > have Ehlers-Danlos type II. " When I asked what can be done, he said that > there was no treatment & just be happy that I didn't have the > vascular type > that kills you. Do you think I should also see a geneticist? > > Peace > Mark > ------------------------- > Undrape! you are not guilty to me, nor stale nor discarded, > I see through the broadcloth and gingham whether or no, > And am around, tenacious, acquisitive, tireless, and > cannot be shaken away. > --Walt Whitman-- > Re: EDS & TIA's info > > > > Hi Mark, > > > > Good to hear from you! > > > > I am so sorry that you have experienced this, but grateful that > this last > > episode was in the presence of your doctor. I hope you are improving! > > > > I have some literature that I will send you privately. You > should contact > > the geneticist who diagnosed your EDS to further elaborate to > the rest of > > the medical world involved in your care, how EDS 'works'. Coming from > > someone who diagnoses it will carry a great deal of water! > > > > Jill > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 I'm in Louisville, KY. Last time you check the list, there were none, but that was a year or so ago. I can also get to drs. in Indiapolis, IN & Cincinnati OH if you having any listed there. Thanks! Peace Mark ------------------------- Undrape! you are not guilty to me, nor stale nor discarded, I see through the broadcloth and gingham whether or no, And am around, tenacious, acquisitive, tireless, and cannot be shaken away. --Walt Whitman-- Re: EDS & TIA's info > You are never a freeloader! > > It may be worth seeing a geneticist mark, where are you located again? > Perhaps there is a geneticist on our doctors list that you can see. > > Jill > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 Why yes, Louise, it is a reference to Jabberwocky. I would read & reread _Alice in Wonderland_ & _Alice through the Looking Glass_ as a kid (and occasionally now as an adult). I've been greatly influenced by nonsense. That's why I cope so well with current state of medical care & doctors. :'_) Peace Mark ------------------------- Undrape! you are not guilty to me, nor stale nor discarded, I see through the broadcloth and gingham whether or no, And am around, tenacious, acquisitive, tireless, and cannot be shaken away. --Walt Whitman-- RE: EDS & TIA's info > here's a real off-topic question, Mark. Any chance your email addy > (brillig01@...) is a reference to Jabberwocky? > Louise > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 And I am sorry to say that there still isn't anyone on the list in those areas. I am sorry Mark. I wonder if the rheumatologist who made the diagnosis could refer you to someone there? Jill I'm in Louisville, KY. Last time you check the list, there were none, but that was a year or so ago. I can also get to drs. in Indiapolis, IN & Cincinnati OH if you having any listed there. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 I live in the city (Louisville, Kentucky) that is the home of the new artifical heart. As a matter of fact, I went passed the area where they do transplants & implant artifical hearts when I got my ct scan at Jewish Hospital ER. But I can't find a single doctor that knows a thing about EDS. Irony, can't get away from it when you have EDS. Thanks for trying, Jill. If I do find a good dr., I'll let you know so you can add it to the list. Peace Mark ------------------------- Undrape! you are not guilty to me, nor stale nor discarded, I see through the broadcloth and gingham whether or no, And am around, tenacious, acquisitive, tireless, and cannot be shaken away. --Walt Whitman-- Re: EDS & TIA's info > And I am sorry to say that there still isn't anyone on the list in those > areas. I am sorry Mark. I wonder if the rheumatologist who made the > diagnosis could refer you to someone there? > > Jill > > > > I'm in Louisville, KY. Last time you check the list, there were none, but > that was a year or so ago. I can also get to drs. in Indiapolis, IN & > Cincinnati OH if you having any listed there. Thanks! > > > > > > Quote Link to comment Share on other sites More sharing options...
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