Guest guest Posted July 17, 2004 Report Share Posted July 17, 2004 , I am not sure I remember you and your intro? Nevertheless... it is frustrating that and the other fever disorders are not well known. HOWEVER you need to realize that there are MANY MANY disorders that are unknown... to healthcare professionals. The important quality a healthcare provider should exhibit is recognizing that something is going on... initiating some tests... and sending the individual to someone ELSE and accept that they might not know everything!! Medicine is a science... and we are continuously learning. With genetics becoming so so into play and the newer ability to identify mutated genes.... diagnostic work-ups will be simpler in some ways... yet the insurance industry may become more and more powerful... and EXCLUDE many people who might show a genetic mutation of some sort!! Also on the other end of the spectrum.... there are some doctors who are now labeling TOOOOOOOOOO many kids with and NOT testing for the genetic fever disorders... Thankfully parents have found our group and educated themselves... and asserted themselves... in obtaining DNA studies... ONLY to find that their child has FMF, TRAPS or HIDs... Crohn's and Bechets.... is a difficult diagnosis. Because there is NO definitive tests for this. My pediatrician is WONDERFUL... He knew something was wrong with ph by his third cycle.... Although he NEVER treated a child with ... he did have one with FMF. I was immediately sent to a specialist... because our doc believed along with a local infectious disease doc... that ph most likely had some sort of periodic fever disorder... or something else.... He did not ever make me feel bad... or that I was over-reacting. We learned together. My best friend is a seasoned Advanced Nurse Practitioner... who works in Peds for over 12 years... and she too never heard of .... Hopefully now that the disorder is getting older... (named in 1987 by et al) and first research published in 1999.... and NEW research is currently being done at NIH NOW.... the disorder will become better known... and better diagnostic tools will be implemented. God Bless, Fran Fran A Bulone Mom to ph 5 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2004 Report Share Posted July 17, 2004 , I am not sure I remember you and your intro? Nevertheless... it is frustrating that and the other fever disorders are not well known. HOWEVER you need to realize that there are MANY MANY disorders that are unknown... to healthcare professionals. The important quality a healthcare provider should exhibit is recognizing that something is going on... initiating some tests... and sending the individual to someone ELSE and accept that they might not know everything!! Medicine is a science... and we are continuously learning. With genetics becoming so so into play and the newer ability to identify mutated genes.... diagnostic work-ups will be simpler in some ways... yet the insurance industry may become more and more powerful... and EXCLUDE many people who might show a genetic mutation of some sort!! Also on the other end of the spectrum.... there are some doctors who are now labeling TOOOOOOOOOO many kids with and NOT testing for the genetic fever disorders... Thankfully parents have found our group and educated themselves... and asserted themselves... in obtaining DNA studies... ONLY to find that their child has FMF, TRAPS or HIDs... Crohn's and Bechets.... is a difficult diagnosis. Because there is NO definitive tests for this. My pediatrician is WONDERFUL... He knew something was wrong with ph by his third cycle.... Although he NEVER treated a child with ... he did have one with FMF. I was immediately sent to a specialist... because our doc believed along with a local infectious disease doc... that ph most likely had some sort of periodic fever disorder... or something else.... He did not ever make me feel bad... or that I was over-reacting. We learned together. My best friend is a seasoned Advanced Nurse Practitioner... who works in Peds for over 12 years... and she too never heard of .... Hopefully now that the disorder is getting older... (named in 1987 by et al) and first research published in 1999.... and NEW research is currently being done at NIH NOW.... the disorder will become better known... and better diagnostic tools will be implemented. God Bless, Fran Fran A Bulone Mom to ph 5 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2005 Report Share Posted November 8, 2005 - Hang in there - people just don't understand - perhaps they don't want to understand - but I share your feelings. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2005 Report Share Posted November 8, 2005 I here ya on doctors. I dread having to go to them for anything. Ususally they treat me like they think I am nuts, and they never seem to be able to resolve anything for me, and I am talking totally non-CMT stuff. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2005 Report Share Posted November 9, 2005 Thank you. And any info you could give to me would be great. I'm still new at all of this and trying to learn as I go. > I guess I've had so many doctors and grew up in an era where I was > taught to speak out and speak my mind. The way I look at doctors is > this: a doctor WORKS for me (either my insurance or I pay for > services, this then means the doctor is an 'employee' to me) > > While I respect the opinions of the best docs I have and can find > when I need a specialist, I always reserve the right to refuse > treatment or therapy. I also have a DPAHC and update it 2X a year. > > Are you familiar with the Patients Bill of Rights? I will see if I > can find it and repost. > > Since no doctor on this planet has a better handle on my CMT and on > my body than I do, well, I consider what I have learned thus far and > then I sometimes print info for my doctor (just the Internist). He is > the most clueless, but is OK for routine tests, and that stuff. > > I quit seeing a neurologist on a regular (every 6 months basis a long > time ago) - saw one for a consult only and opinion on my spinal MRI > in 2001, I think. I no longer have check-ins with my spine surgeon, > unless something happens to my back - and believe me, I do all I can > exercise wise to prevent that. > > It is sad our medical world is changing and so many docs have > forgotten how important patients are, and instead are focused on > making another dime. Right now I have the utmost respect mostly for > research doctors. Doctors out in the trenches all day have lost their > concept of " patient care " and their hypocratic oath. > > I'm so sorry you had this negative experience and hope your future > visits will be better. > > ~ Gretchen > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2005 Report Share Posted November 9, 2005 I guess I've had so many doctors and grew up in an era where I was taught to speak out and speak my mind. The way I look at doctors is this: a doctor WORKS for me (either my insurance or I pay for services, this then means the doctor is an 'employee' to me) While I respect the opinions of the best docs I have and can find when I need a specialist, I always reserve the right to refuse treatment or therapy. I also have a DPAHC and update it 2X a year. Are you familiar with the Patients Bill of Rights? I will see if I can find it and repost. Since no doctor on this planet has a better handle on my CMT and on my body than I do, well, I consider what I have learned thus far and then I sometimes print info for my doctor (just the Internist). He is the most clueless, but is OK for routine tests, and that stuff. I quit seeing a neurologist on a regular (every 6 months basis a long time ago) - saw one for a consult only and opinion on my spinal MRI in 2001, I think. I no longer have check-ins with my spine surgeon, unless something happens to my back - and believe me, I do all I can exercise wise to prevent that. It is sad our medical world is changing and so many docs have forgotten how important patients are, and instead are focused on making another dime. Right now I have the utmost respect mostly for research doctors. Doctors out in the trenches all day have lost their concept of " patient care " and their hypocratic oath. I'm so sorry you had this negative experience and hope your future visits will be better. ~ Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2005 Report Share Posted November 10, 2005 ya know if doctors and the AMA would weed out all these doctors getting sued and losing all the time, then maybe the good doctors malpractice inasurance would be more affordable and the doctors could get back to patient care and not worry about making that almighty dollar. did you know there is a grass roots organization of doctors trying to do just this and the AMA is fighting the doctors and calling them extremest and unrealistic?? I saw this on the news at 2 am the other morning just when everyone was asleep and couldn't see it. Cathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2005 Report Share Posted November 11, 2005 That's an excellent idea. > ya know if doctors and the AMA would weed out all these doctors getting sued > and losing all the time, then maybe the good doctors malpractice inasurance > would be more affordable and the doctors could get back to patient care and > not worry about making that almighty dollar. did you know there is a grass > roots organization of doctors trying to do just this and the AMA is fighting > the doctors and calling them extremest and unrealistic?? I saw this on the > news at 2 am the other morning just when everyone was asleep and couldn't see > it. > > Cathleen > > > Quote Link to comment Share on other sites More sharing options...
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