Getting Personal: Kidney Stones, Gallstones, MS And Finding The Right Doctors
Last updated: November 2021
Six years ago I had kidney and gallstones at the same time. It was the worst pain I’ve ever experienced, even more painful than childbirth. It was a stabbing, unrelenting pain that sent me to my knees begging for mercy.
You get the picture
I waited in the busy ER for over 6 hours to be seen by any medical personnel for my gallstones. I was misdiagnosed a few times before a correct diagnosis was found. I was finally admitted.
The short story is that I had gallbladder surgery. A few weeks later several kidney stones were surgically removed because they were too large to pass naturally. A few were “blasted” out by a procedure called lithotripsy. Lithotripsy uses shock waves to break the stones up, allowing them to pass pain-free through your urine.
By the time I arrived home I felt physically and emotionally battered. My hormones were raging and caused a deep depression. I experienced an MS exacerbation on top of everything else.
What was the lesson in all of this? It was time to change doctors who were affiliated with the best hospitals. I needed to be prepared in case of any future emergencies, and I didn’t mind driving far for good medical care.
Armed with a new doctor whose practice was made up of internists specializing in nephrology (issues with the kidney) I felt safe and cared for. I was instructed to drink 64 ounces of water a day and prescribed 3 horse pills a day of potassium citrate to, hopefully, avoid any more kidney stones.
That was then, this is now.
Over the past few months I noticed the need to urinate more often, sometimes having to stand and sit and stand and sit to fully empty my bladder. Sometimes I hold my breath and squeeze tight to empty it more.
Was this a new MS symptom? Was this a kidney stone symptom? Did I have another urinary tract infection? Which specialist do I call?
I finally called a urologist who examined me. After analyzing my urine sample he gave me the bad news: I had 3 new soon-to-be-large kidney stones.
He also informed me that the dosage of potassium citrate prescribed by my doctor was not nearly strong enough. In fact it was pretty benign.
Yikes. I wanted to cry. I became angry with my doctor. I remember telling him numerous times that I felt short, stabbing pains in my back only to have him shrug it off by saying, “If it was kidney stones, you’d know it.”
What kind of medical care is that? Why didn’t he order X-rays and test my urine to see the cause? Why wasn’t he proactive?
I was also angry with myself.
After getting the bad news from my urologist I went straight to my local imaging center, as prescribed by him, to get an X-ray so he could locate exactly where the stones were. The next day I physically placed the CD of my X-ray into the office’s hands. I wanted to speed things up.
Now I’m waiting to hear from my urologist about scheduling my lithotripsy. I called at 9am today, and if I don’t hear back by 1pm I’ll call again. And again. Until I receive the answers that I need.
I no longer wait in silence or worry that I’m a thorn in someone’s side. When it comes to medical care we all have to advocate for ourselves.
Living with Multiple Sclerosis teaches us many valuable lessons, one of which is we must never be silent. Ask questions and probe until we get what we need. Never settle for a doctor who doesn’t listen.
I’ve changed neurologists several times for that very reason. I am kicking myself now for not being more proactive with my nephrologist, and now I am paying the price. The stress is affecting my MS and I'm trying to b-r-e-a-t-h-e and meditate to keep my emotional health in check.
I have a new nephrologist, and hopefully my new urologist will provide me with quality care.
Please keep a good thought for me.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: