Getting Personal: Kidney Stones, Gallstones, MS And Finding The Right Doctors

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.

It took several months of counseling and a lot of medication to get me back on the road to wellness.

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (8)
  • alchemie
    4 years ago

    Thanks for sharing Cathy. I feel for you, I do! I haven’t had kidney stones yet, and I say yet because every year, I seem to be getting diagnosed with yet another chronic illness. I heard that if you don’t drink a lot of milk, you’ll get them. I haven’t been doing that lately. I was diagnosed with Reactive Hypoglycemia in December last year, and I haven’t been eating/drinking a lot of stuff that I used to. Hey at least they figured out why my fatigue was 10 times worse than just your normal MS fatigue. I knew something had been going on but until I got my blood work done, I had no clue. Anyway, my sister is going through some kidney work. She hasn’t got the results back yet. It might explain some genetic stuff though. My mom had to have dialysis once. That’s a long story but doctors never gave us a reason why. HIPPA crap is what they said. Anyway, hopefully you’re new doctor will be treating you excellently! Keep writing chick!

  • Cathy Chester moderator author
    4 years ago

    Thanks, alchemie, for your good thoughts. I never read anywhere about milk before! But they do say that lemonade (watch the added sugar, though) is a great way of trying to prevent forming kidney stones. My genetics work against me, though. My entire family has had kidney stones – both parents and two brothers – and it extends back to great-grandparents! Keep drinking lots of water! I drink 64 oz. a day, the recommended requirement. Best to you always, Cathy

  • But You Look So Well
    4 years ago

    Oh my dears, do I feel for you! I have had pyelonephritis TWICE since I was 20 years old, and there truly is nothing worse than the pain we have experienced. I also have been much blessed by my doctors, but my neurologist is another story. I like the guy, but a good advocate for an MS patient he is not. Please, do your homework and be a tireless advocate for yourselves. Truly, nobody else is going to do it. And you can’t hurt a doctor’s feelings. If he or she is in the profession for some reason other than taking the responsibility to listen to their patients, they are not worthy of your consideration.

  • Cathy Chester moderator author
    4 years ago

    You are so right about doctors. I’ve changes mine (as recently illustrated by changing nephrologists this month and I am about to change urologists!) Kidney stones? Worse than childbirth.

    Thanks for leaving your comments and sharing your story with us. I am glad your enjoyed my article.

    Best~
    Cathy

  • Teri
    4 years ago

    I have been bless with my neurologists. But my general practitioner? I finally switched. I do not want to do a “lesson” on MS every time I have a symptom, only to be told that I “blame” everything on MS. I will be going on Medicare soon and getting a supplement ( if someone will cover me in my state because I am under 65 —think nightmare) But I refuse to use doctors that someone else tells me—I know it is difficult to know everything about every illness but if you have a patient with an illness, study up, learn, ask questions, take a class—I don’t have a choice about MS but I do have a choice about the people I deal with. Getting old and feisty.

  • Cathy Chester moderator author
    4 years ago

    Good for you, Teri! I am also under 65 and on Medicare so I hope you can get what you need. Yes, we do have a choice about our doctors – thank goodness!

  • Pam
    4 years ago

    why is it that drs wont listen? do the tests that will prove or disprove what we think is happening to us? and do you find yourself having more health issues than non-ms-sufferers? like so many things happening to you? its confusing when the dr says that your issue is not ms related. not buying it..and then months later it is related?

  • Cathy Chester moderator author
    4 years ago

    That’s why we have to keep on pushing until we are satisfied with the answers we receive, Pam. Don’t ever give up until you’ve asked ALL of your questions. The other day I told my doctor he can’t go to his next patient until I ask all of my questions. He didn’t like it, but I got what I needed!

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