MSK OnlineProject

As an MSK patient, I am continuously doing random searches on MSK just to see if I can find any information on even a part of the seemingly random symptoms which no doctor has been able to explain for me. Unfortunately, all I find is the same regurgitated definition of MSK: “Medullary sponge kidney (MSK) is a birth defect of the tubules - tiny tubes inside the kidneys. In a normal kidney, urine flows through these tubules as it is being formed. In MSK, tiny sacs called cysts form in the medulla - the inner part of the kidney - creating a sponge-like appearance. The cysts keep urine from flowing freely through the tubules. MSK is present at birth, but most cases do not appear to be inherited. Problems caused by MSK include hematuria, or blood in urine; kidney stones; and urinary tract infections (UTIs). But these problems do not usually appear until the ages of 30 to 40. MSK affects about 1 person per 5,000 to 20,000 people in the United States.” (http://emedicine.medscape.com/article/242886-overview#showall). In most of the literature, the only time pain is associated with MSK is when you are passing an active stone or when you have a UTI. The lack of information in the medical literature (and even more so in the medical community) is extremely disheartening. What’s worse is, in talking with other MSK patients, it appears that the consensus is that even the little amount of information on MSK that IS there is wrong. And add to that, from our questions to several urologists and nephrologists, it also is apparent that the time spent in med school on MSK is hardly noteworthy; it seems to be a subject that is only briefly discussed, at best.
Many physicians may only come across one or two patients with MSK in their entire career, and most will tell you they know very little about it but are willing to learn and figure it out with you. As an MSK patient this is what you want to hear, but as you go through doctor after doctor, you know this is hardly the case. You have symptoms that they can’t explain, you have pain they can’t explain, and you have questions they are unable to answer. Please don’t misunderstand me, there are doctors that are willing to listen and learn with you, but there is also a bigger percentage of doctors who, for some reason, feel compelled to agree with outdated medical literature and politely close the door in your face. I have had experience with both the willing and unwilling and have come to the conclusion that I know my body best: I know when something isn’t right, I feel when something isn’t right, and I will continue to search for a someone who is willing to find the answers and help me to the fullest extent possible.
One of the biggest complaints an MSK patient has is about the chronic pain and the search for solutions to fix and help the pain. We are all individuals; what works for me may not work for you. You need to become your own advocate and find and fight for what works best in your case. I used to go to the ER when the pain got to be unbearable; it was several trips a year and back in 2007 it seemed like I was there nearly once a month. I quickly became labeled as a “drug seeker”; it didn’t matter that my urine was red, or that my scans showed both active stones and extensive nephrocalcinosis in both kidneys - I was there looking for relief and answers but the ER doctors and nurses still treated me like an everyday junkie. When my scans didn’t show an active stone, I was sent home to deal with the pain on my own and told, “stones inside the kidneys do not cause pain,” yet the urine is still red and my blood pressure dangerously high (a sign of pain). What the doctors didn’t seem to understand was that, if I was just looking for my next fix, it would have been so much easier to see one of the “feel good” doctors that plagued the city I lived in at the time. I could have easily made an appointment with them and been written script after script for pain meds. It was my mistake, it seemed, to be looking for real answers regarding the pain, and at a “feel good” doctor I know I would have received neither answers nor proper care.
In March, 2012, I met my MSK savior in the form of Dr. J. Stuart Wolf at the University of Michigan. Dr. Wolf is an endourologist and is one of the best at what he does. My husband and I packed our three young girls in the car and drove for two days just to meet with Dr. Wolf. He was the most caring and compassionate doctor I had met at that point. Not only did he acknowledge my chronic pain, he called me “the poster child for chronic pain in MSK.” I will never forget my experience with him. He told me exactly where my pain was coming from: he told me that inside the kidneys there are pyramid-shaped structures, and inside these pyramid structures there are nipple-like nodules that excrete urine and this is where our problem begins. As the waste (urine) is being excreted into the collecting tubules, it backs up. In MSK patients, these tubules are dilated which seriously hampers the process of getting urine to the ureters. As urine is allowed to back up and sit there, tiny crystals of oxalates and calcium are able to bind together and attach to different structures within the kidney, including the nipple-like nodules. He defined this process as a stone being born, and in MSK patients this is where most of their pain begins. These crystals and stones are tiny and sharp and float around in the urine, attaching themselves to any surface they can. Every move we make causes them to move around and continuously dig and rip into parts of the kidney. He also explained that this is the reason so many MSK patients have blood in their urine with no active stone dropping or infection - because of the stones that are constantly bouncing around in the kidneys. Dr. Wolf performed a ureterscopic laser papillotomy, and although I still have pain, it is nothing like it was before. He cleaned out my left kidney, but unfortunately, by the time I found him (the only one willing to help), I had already developed extensive nephrocalcinosis which cannot be undone. Again, I found myself needing pain relief, and because the nephrocalcinocis could not be undone, I needed a long term solution. My second savior came April, 2012, when I was referred to a pain management specialist, Dr. H. Besides Dr. Wolf, Dr. H has been the second most caring doctor I have met. She may not truly understand the mechanisms behind my pain, but she believes in my pain and listens to me. She has run more blood work on me and found numerous inconsistencies with certain levels, than any other doctor I have seen. She has been the most diligent and helpful in my treatment and, best of all, she has kept me at a pain level where I am able to be a productive member of my family.
Since the discovery of MSK in 1939, very little research has been done on MSK patients, which is a huge hindrance for a patient wanting a compassionate doctor for their treatment. I have only been able to locate one medical article that even briefly touches on chronic pain In MSK patients, and is written by Amit K. Ghosh, MD, DM, FACP: “Some physicians may encounter patients with medullary sponge kidney who claim severe, chronic renal pain without any manifestation of infection, stones, or obstruction. The source of this pain is unclear. These patients may be treated best by physicians comfortable with chronic pain management.” (http://emedicine.medscape.com/article/242886-overview#showall). More research needs to be done to educate the medical professionals that treat us. It is quite clear that if doctors were to come together and compare their MSK patients’ complaints, pain would be a huge symptom that they could no longer ignore. Our kidneys hurt. Yes, we have symptoms that are the normal documented symptoms, but also, through this MSKOnline project, we are learning that symptoms like chronic fatigue, depleted energy, insomnia, and migraines may also be associated symptoms of MSK. I, for one, am ready to tell my doctor that it hurts and have him respond by saying, “I know you hurt, and we are doing everything possible to try to help your kidneys out.” With all the latest reports about kidney stone incidences doubling in the US, ( http://www.npr.org/blogs/health/2012/09/10/160741926/doctors-take-aim-at-epidemic-kidney-stones-with-lasers), and a very disturbing report about chronic kidney stones being a precursor for CKD and kidney failure, (http://www.vancouversun.com/health/Kidney+stones+increase+risk+renal+failure+says+study/7205281/story.html?fb_action_ids=10152091450485394&fb_action_types=og.recommends&fb_source=timeline_og&action_object_map=%7B%2210152091450485394%22%3A100543260103257%7D&action_type_map=%7B%2210152091450485394%22%3A%22og.recommends%22%7D&action_ref_map=[]), patients like me need the research!