My Battle with Medullary Sponge Kidney Disease (MSK)

My Battle with Medullary Sponge Kidney Disease (MSK)

Mary Maston

I have a rare, congenital kidney disease called Medullary Sponge Kidney or MSK. Because my kidneys didn’t form correctly, they don’t filter properly and form massive kidney stones that I’m unable to pass on my own and require multiple surgeries to get rid of.

MSK is a progressive disease and even though I’ve changed my diet, my kidneys will continue to worsen as I age. The consensus from the medical field is that MSK is not painful. Nothing is further from the truth! MSK is extremely painful, and I suffer with chronic pain and will for the rest of my life. I’m 37 years old.

I also have renal colic and Nephrocalcinosis, which causes calcium to build up in my kidneys and harden. There is no way to get rid of the calcium without causing extensive, permanent damage to my kidneys.

I moved from Tennessee to Florida in March, 2011 and started a new job as an office manager. By June, I was in the ER with more kidney stones.

After struggling for over a year with MSK and not being able to find a doctor here in Floridato help me manage my symptoms with pain medication, I started advocating to raise awareness about MSK. Just when I started to make some headway in my efforts, Florida passed a series of laws restricting access to pain medications. These new laws are wreaking havoc on the lives of every chronic pain patient in the state, not to mention other states that are passing similar laws.

I was able to persuade the American Chronic Pain Association to list MSK on their website as a chronic pain disease, and I have an online petition going which describes in detail what it’s like to live with this disease, and to raise awareness and help promote new research and treatment options. I was recently asked to be a guest contributor on kidneystoners.org. This website was created by some of the top urologists in the country, and because of MSK patients writing to them, they updated the site to acknowledge pain with MSK. This is a huge step in the right direction for us.

I have also done several YouTube videos to tell my story and to advocate for the disease:

Since starting all of this, and after suffering tremendously for over a year, I was finally able to find a wonderful pain management doctor here in Florida to help me try to manage my symptoms. I started seeing him in April, 2012 and since being on medication my life has improved considerably. Before I was able to find help, I was bedridden. Now that I’m on a steady schedule of pain meds, I’m able to get out of bed and spend time with my kids. I still have a lot of pain and I can’t be too active, but the medication makes it bearable and I’m able to function.

Now that I’ve found this doctor, I’ve had extreme difficulties getting a pharmacy to fill his prescriptions. Because I couldn’t find anyone in my town to take me as a patient (a large part of that is because I don’t have insurance), I have to travel almost 30 miles away to see my doctor.

We all know with the policies that the pharmacies are implementing, that this puts me in a very awkward situation – my regular pharmacy won’t fill it because the doctor is too far away, and the pharmacies in the town I travel to don’t want to fill it because it’s a narcotic and I don’t reside in the area.

Luckily, I was finally able to find a pharmacy in that town, but they won’t fill my narcotic prescription without having a non-narcotic prescription to go with it. Another hoop to jump through! I swear, sometimes I think they are all trying to get chronic pain patients to commit suicide, just so they don’t have to deal with us anymore!

There is no common sense involved with these laws AT ALL!

I am trying to reach more MSK patients worldwide, who are suffering and are not aware of the resources that are available. I have a specific goal of reaching MSK patients in Florida who would be willing to participate in my USF Tampa Project. I’m looking for patients who would be willing to participate in a clinical trial if I can convince USF to start one. I’ve been working on this project for a little over 8 months, and have quite a bit of information compiled.

I’m also a very active member of a closed MSK support group on Facebook which has 275 members and is growing every day. If you are a MSK patient and would like to connect with other MSKers that are willing to offer advice and support, please request to join.

The views, opinions and positions expressed in this column are the author’s alone. They do not inherently or expressly reflect the views, opinions and/or positions of American News Report, National Pain Report, Microcast Media Group or any of its employees, directors, owners, contractors or affiliate organizations. American News Report makes no representations as to the accuracy, completeness, currentness, suitability, or validity of any information in this column, and is not responsible or liable for any errors, omissions, or delays (intentional or not) in this information; or any losses, injuries, and or damages arising from its display, publication, dissemination, interpretation or use.

Opposing views, opinions and positions about this post are welcomed by American News Report, National Pain Report and or Microcast Media Group. Publication or lack of publication of opposing views, opinions and/or positions does not imply, suggest or expressly reflect an endorsement or disapproval of the originating commentary on the part of American News Report or Microcast Media Group.

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Marie-Anne

Hi, I’m so happy to have found your video now I don’t feel so alone in my unbearable suffering. I got diagnosed with MSK febuary of last year after suffering years with unexplained UTI’s and horrible pain that started during my second pregnancy. They have not been able to find any stones in CT’s, X-rays and ultrasounds and the only concrete evidence Ive had was found on an ultrasound which showed fluid around my right kidney. I’m in chronic pain and get occasional horrible nausea, sweating, palpitations and panic attacks and because they cannot find any stones ( even though ive passed several small ones almost every month or so) they don’t do much for me. Several times Ive had blood and protein in my urine without infection, it’s just horrible. I am also on a medication which affects the kidneys ( lithium carbonate) and have asked my urologist if I should be concerned about the long term effects to my kidneys due to the MSK and having to take a medication that evidently can cause diabetes insipidus or filtration issues and he told me no and i honestly dont believe him. I’m worried about my future because I’ve noticed that nothing is getting better in fact its getting to be more of a regular occurrence.

Sarah Barnes

Hi, I am so grateful to find you. I have spent so many years feeling so isolated because of MSK. I too am 37, for a few more days. I have four kids and a hubby. I am so tired of being tired. Tired and in pain. No one feels sorry for you just because you have a name for your disease. It’s not well known and it’s not cancer. Most friends and family are burnt out “feeling sorry for me”. I will definitely get onto the support groups and links you have above. Hope to hear more from you soon.

APRIL SWEENEY

hi I HAVE HAD THESE DISEASE ABOUT 10 YEARS. IT JUST CONTINUALLY GETS WORSE. IS THERE ANYTHING THAT CAN HELP ME. i SEE A PAIN MANAGEMENT DOCTOR TOO. BUT HE IS ASIAN (EITHER CHINESE OR JAPANESE AND HIS ENGLISH IS HORRIBLE BUT THAT IS WHO MY INSURANCE SENT ME. IM ON A 24 HOUR PILL CALLED EXALGO………BUT ITS NOT HELPING ENOUGH. I HAVE TRIED MORPHINE, LORTAB, PERCOCET, AND EVEN FENTANYL PATCHES. DO YOU TAKE ANYTHING THAT ACTUALLY HELPS YOU?

NEW for MSK patients: The MSK Online Project is a new website developed specifically to collect, compile and analyze the symptoms and experiences of MSK patients. The goal of the site is to utilize the collective information of as many MSK sufferers as possible in hopes of establishing meaningful and helpful information for patients and doctors.

Please join the project!

It is free to participate
You can submit your data anonymously
The results of the project will be published and made available to anyone who wants it at no cost.

Although I do not share your disease, Ms. Maston, I do share your difficulty with finding my prescriptions every month. I am horrified at how difficult it is to just be able to get my medication, the same one I’ve received for years, but now suddenly never know from month to month what horror I might have to suffer when my 30 day supply runs out. This situation is not right! Legitimate patients should not have to suffer like this. Indeed, as the prescriptions are for pain, we are left to do the pharmacy crawl without any pain relief. No one can drive around to pharmacy after pharmacy every month in pain and on the brink of withdrawal nor should we have to! Thank you for writing about this aspect of your struggle. You are representing thousands of people who have no recourse other than to try to educate the public to this very inhumane situation.

john

My mother had this disease and passed it to me also I am only 21 but have just little symptoms but my moms symptoms was chronic she passed 3_ 4 stones a week and eventually passed away in 2004 due to a blood clot. I support you and understand your pain from watching my mom and that I have this disease also.