Guest guest Posted April 28, 2005 Report Share Posted April 28, 2005 Thanks, this helps. It's nice to know this type of cooperation does exist. Maggie > > > I called a local genetics/metabolics clinic, to see if I could get > > to > > > see them sooner than Dr. K, and this local doctor's office person > > was > > > grilling me about if I " only wanted to see what they thought, but > > > wouldn't listen to them " . It seems since they aren't at a " big > > > hospital " , people see them because it is convenient, but go > > against > > > their advice to follow specialists from around the country (U.S. > > in > > > this case) or even around the world. > > > > > > I was straight with them, in that I told them I wanted to find out > > if > > > I have a urea cycle disorder (in addition to mitochondrial > > disease), > > > and that was my main goal. My MDA neuro is my " main doctor " , and > > I > > > have about five others that are specialists in other areas. > > > > > > Most of my doctors are conservative, so they aren't " interfering " > > > with each others specialities too much. But I find it frustrating > > > that a doctor's office would say " I don't want to be your doctor > > if > > > you have a lot of doctors already " (I don't have a metabolics > > doctor > > > yet, but am visiting Dr. K later this year). Are a lot of people > > in > > > this situation? > > > > > > Perhaps many of you are like me, that you're afraid if there are > > no > > > local doctors familiar with your case, there'll be big trouble if > > you > > > go to the ER. Even so, this " local doctor " is 45 minutes away, so > > > I'd have to notify people that I'd want to go to that hospital if > > I > > > have a problem. I am 50 miles away from Phila. and NYC, so don't > > > have big reputable medical centers available at the drop of a hat. > > > > > > Thanks, > > > RH > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > > are not necessarily those of the list moderators. The author of this e mail > > is entirely responsible for its content. List members are reminded of their > > responsibility to evaluate the content of the postings and consult with > > their physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is > > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
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