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Kidney Disorders Message Board

Kidney Disorders Board Index

I suffer life altering pain, I pass chronic kidney stones- have for 10 years- the last 5 yrs the worst. Its like going through LABOR at home but, instead of like labor it taking less than a day- passing one stone can take up to several days,weeks or months. Hitting w/ stabbing pain that takes your breath away, can bring you to your knees- sometimes its a continous throbbing of my kidney for days and sometimes it feels like someone stabbing a knife into your lower pelvis or side. This can steadly hit again and again- getting closer and closer & more painful the closer i get to passing it. Then finally i pass this little sticker burr looking thing and then it starts over a day later, 3 days later and so it goes. I've passed over 180 of them. I've been to 3 nephrologist, 4 well known urologist. Is there anyone else who does this? I have one child and my pregnancy was aweful bc the stones got worse. I can't have another baby unless this gets better. I want another child and I want to get well. I've had 5 or so litho's, stents that hurt horribly- had to take them out 2 days later (this during pregnancy). Here's what I do: I pass blood, dont pass blood, pass big stones- some they say I couldn't bc they were too big,pass little bitty stones, had them stuck blocking kidney, have had dr tell me I'm most difficult case he had had (good dr at big medical center), had CT and dr say no stones then i go home and pass a HUGE one 2 DAYS LATER, have had blood and severe pain and dr's sometimes dont see a stone- when HELLO I know what's going on by now UGH!, have had dr's tell me to drink beer and go running during a passing episode( like to see the dr even WALK passing a stone), have been treated like drug addict bc of meds I've had to take. I have 2 distant cousins (3rd cousin's or 4th) that do the same as me and have been told to "deal" w/ it for rest of life. I've been told dr's THINK my stones are uric acid, been told they are unreadable, have been told to drink a gallon plus of water a day, diet, take allopuinol-dont take it, same w/ uricitK and vitamens, no prenatels while pregnant. I'm severally allergic to toradol and IVP dye for CT's to see where stones are- had anaphalactic shock w / those and NSAIDS. Told dr's tested my parathyroid and it was normal and THEN WAIT!!!!- my family Dr finds a lump by my thyroid and sends me to endocinologist (my family has thyroid issues-my mom has something where her thyroid affects her autoammune system)Endo Dr does ultrasound and blood work. Says my thyroid is inlarged and covered in nodules everywhere, peach pit size knot is on my lymp gland(have to watch both to make sure they don't grow b/c worry about cancer) Dr says my thyroid looks bad but is working correctly. He says though that my blood work says I'm severly D3 defficant- should be 80 and I'm a 15? Have to take 50,000 units of D3 a week for 8 months. In the past months I've gained over 40ibs(happened while I was in hosp fighting bad staph infection-5 days, I went in 136 came out 5 days later swollen up and wieghing 178----WHAT????) Thought it was water wieght from iv fluids would go away in 2 weeks...had happened before while passing stones in hosp- would go in size 6 come out a 12- then go home uinate alot and it would go away- this time it never left. I've passed all these stones all these years now, in last year massive wieght gain, depression, moody, sweating all the time, breaking out in places i never have before, itch, major swelling some numbness and pain all over. I've heard these are all D3 def symtoms? anyone have this? have this w/ weight gain? anyone gain that much wieght in such a little time? Have chronic stones, info on that? Anyone know if the vitamen def could have caused all or any of these stones? how long does it take to feel better after starting d3 pills? wieghtloss? anyone get well after chronic stones? I need help. As blessed as I am in every other way- kidney stones, ect. is making my life so hard. any help or advice- I will welcome. thanks.

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