Hi all I posted this on my main thread but I don't think anyone can see it so have posted a new topic. I have my operation on Wednesday morning for my catheter.. Pretty nervous but my main issue has been I've been given a calcium overdose by my doctor. She gave me another top up script so I know I was told to up it.
I have been having terrible shooting pains in my legs which seems to be creeping up to my arms now. I can barely eat anything due to all my teeth/gums extremely painful. I went to the dentist as I first thought it was a dental issue. He couldn't find anything but I couldn't go on with this pain. I ended up having loads of work done I probably don't need and I'm still in major pain. It has also affected me EGFR as went from 9 to 5 in 4 weeks. My bloods showed 15 x the average amount of calcium.
My specialist told me to stop all calcium supplements and milk etc. I stopped 4 days ago and if anything it's worse.
I'm not sure what to do....
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half-glass-full
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I'm so sorry about your pain! My brother is on dialysis and it sounds like he has many of the same problems. He takes calcium acetate with meals to help control the phosphate levels in his body. For the shooting pain my brother takes Gabapentin after dialysis and in the morning on non-dialysis days. He's been on dialysis for 7 years, and in the past year he's been hospitalized multiple times for FLUID OVERLOAD. In the hospital, they do aggressive dialysis to get his labs back in balance. Then he feels good again for a while. Since he's having more fluid overload these days, we're encouraging him follow his nephrologist's guidelines on SALT and FLUID intake. Don't hesitate to ask for a second opinion from a different nephrologist. Best of luck with your surgery on Wednesday and I hope you feel better soon.
Did you call your catheter surgeon and ask them for advice? That would be my first point of attack. I don't remember anyone posting any issue quite like this before. Very sorry this is happening to you.
Thanks for the reply. Im feeling pretty ill now, I was just going to turn up on Wednesday for my operation. I presume they will do my bloods before the op?
If not shall I phone my renal specialist Monday morning? I'm just a bit lost and in pain.
I would definitely call your renal specialist and the surgeon monday am and insist on being seen. I wouldn't just show up for surgery in pain. That's never a good start for this! I pray this has an easy solution for you.
I had my catheter done Jan 12th and while I don't remember them taking labs the anesthesiologist asked A LOT of questions and he's the person I would make sure understood your pain and the possible cause for it. It could affect surgery. I hope you find some relief soon that's got to be just awful.
Please keep us posted on your PD journey, as I and others have done. It helps to have community through this process. Let us know if you have other PD questions.
Hi half-glass-full. I’m so sorry you’re going through so much pain and distress. I’m not sure if you’ll find this helpful (I hope it will be), but I found this link (attached below) from the Mayo Clinic that shows some suggestions on treatment of Hypercalcemia. Please know I’m thinking of you and sending prayers your way dear. Please do let us know how you come along. God bless. ❤️🙏
Generally high blood calcium indicates imbalance of pth. If your phosphorus is really high the parathyroids will pull calcium from bones to reduce the phosphorus. What are your phosphorus and pth levels? Please do not delay this issue. The loss of calcium in bones brings its own unique set of problems you don't want. Believe me.
I also have been told not to eat anything with calcium or take supplements. My teeth ,jaw hurt and my muscles are sore.I have mineral bone disease with ckd.Maybe that's what you have.I pray that you have a good outcome on your surgery.🙏
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eGFR 51 Creat 109 CK 624
Not Diagnosed Yet, But Going To The Doctor Next Week
Maybe bladder along with kidney
eGFR moving up???
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