MKS - Just now news to me, any feedback or tips welcome :)

Hi all :)

I just basically wanted to get some advice or tips, anything really - I have been dealing with kidney stones since I was 19, I'm now 26 (apparently that is pretty young for this doctors keep telling me, if only they could tell that to my kidneys lol?) I've already had one majorly severe infection which made me stay in the hospital for two weeks, I had an emergency operation the night I went into emerge to get a stint in and move the stones and then was on antibiotics for a week and a half and then went to get lithotripsy...since then I've had to get lithotripsy another time and am now waiting to hear back a date to go again :S

I am glad my doctor finally figured out I have MKS but it also freaked me out when I started researching it and learning about it..I'm a baby when it comes to sickness and that and otherwise I am completely healthy...so I guess just any support/tips/advice/anything I'm just a bit freaked out and wondering if I have to go do this lithotripsy thing over and over for the rest of my life? Which is pretty much my doctor's only long-term expectations at this point (I was just in the hospital again with an infection while waiting for the date for my lithotripsy to be set) I can tell exactly what it is bc for one, I don't really get sick much other than when I get a crazy fever and start to feel lightheaded and just feel like shiz lol I know it's my stones have caused an infection again...

Does make sense tho as I read up on MKS and one of the most noted factors was that they cause an increase in UTIs, as I've had trouble with those my whole life and I guess I know why! Since I don't know anyone else personally with this or even anything remotely close at the age of 26 lol...it would be nice to hear from others who are more familiar...thanks to everyone in advance!!! :)

[AgirlIe]

I was Dx with MSK when I was 20. I'm now 28. I have been in and out of hospitals since. I have had multiple surgeries along with stents. It has not been fun. I have just found a new nephrologist that is wonderful. I gave been to many doctors all with different opinions. It is a very frusterating disease and long process. There is a form all for MSK. Stay strong. Continue to look for the right doctor that will work with you. Take care.