Gitelman's syndrome

Since the age of 19 and 2 weeks into starting nursing school I developed a disease called Gitelman's syndrome.  Has anyone, any doctor out there heard of this syndrome?  This syndrome is a defective gene in my kidney that does not reabsorb the potassium and magnesium. In a normal person the kidneys work to keep everything in balance, but because of the amount of potassium and magnesium I loose everyday I could kill a whole bunch of inmates awaiting their death on death row.  I am now 35 and I get IV's @ home through a central line called a port-a -cath.  It is a direct access to my blood line so I do not have to get stuck multiple times with IV needles.  I am not sure how many of you have had IV potassium, but it feels like you are pouring acid on your skin.  I would never do this again.  I am maxed out on my oral potassium to 200 mEq 3x/d. A normal person does fine with 20 or 40 1x or even 2x/d.  So, now you can imagine what I go through each and everyday.  I am also taking diuretics that help keep my potassium, beta blockers for my palpitations that I have developed over the years from the roller coaster ride of my labs, and finally pain meds--percocet or oxycontin for the horrid Joint/muscle pain I get from the same roller coaster ride of my labs.  
Out of all this, I have been blessed to have 2 healthy, happy girls who show no signs of this disease. I did have to be closely monitored and have IV's everyday, due to the facts that I could not take the diuretics while pregnant.

                                                                  Thanks,
                                         If there are any doctors out there that specialize in this disease please feel free to post messages.  

                                                                          Vicky