Long Road

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It's been a long road. Thinking back when I was a child it all makes sense now. Why I was ill now and then and no one could figure it out. Was finally dx 1986 by Rochester MN Mayo Clinic with Barters. Back then thats all they knew. October 2015 due to increase of illnesses over the past year or so was re diagnosed with G.S. and confirmed by genetic testing. It's been a long road learning everything about this. Most Doctors want to treat your numbers, the blood levels of K, Mg, and skip out on the salt. They look at it as a challange to get your numbers in the "norm". I've learned I have, we all have a sweet spot where we will feel the best and it is usually a lot lower than the normal blood serum levels. Dotors should be treating us how we feel and to feel the best. Not just trying to get our numbers in the "norm".  G.S. doesn't care about race, sex or have any preferences. Likewise we all can leak out the electorlytes differently. Some are hardly affected while others are severly affected. Hardly may not need meds, while extreme can be on 12 hour IV's per day. I've learned we need to accept and take the K, the Mg and the Salts to replentish. Will a car run on bad watered down gas. Sure. And that's what we are without the supplements. That car's engine will die prematurely, unless it gets the octane it needs. As with us, we need to be fed right and have engine treatments so we will continue down that long road. Not all medications work the same on us. We do not want to be an experiment of trial and error and move on. I've learned the best thing to do is be your own advocate and argue with the Doctors on what is best for you. To do that you need to do your research. rarerenal.org has great info on this and other dieseases. There is so much to be learned yet. 1 in 40,000 makes it unprofitable for big phamacy to come up with anything. If this was a cancer, affecting 1 in 4 it would mean good money for them and perhaps some new technology for us. Maybe someday down that long road it will happen.