My Journey With Medullary Sponge Kidney

It all started when I had pre-eclampsia in my first pregnancy at age 19, kidney infections in the 3 consecutive pregnancies, then a more painful couple afterwards. I have had sporadic bouts of urethritis in between and after but not had anything since sometime in 2006. I tend to urinate blood whenever I've had red wine, so I don't really drink that now but i'm not much of a drinker anyway. MSK was mentioned to me back in 2008 and then again 3 months ago it was confirmed as a definite diagnosis. The past 18 months I have felt niggly twinges or tweaks in both my kidney areas and sometimes my lower back seizes up completely, which had never happened before - I have very high blood pressure problems and in the last 4-6 months, the pain in my kidney areas seems to be increasing but the past fortnight, my kidney pains are now more like a constant period pain with *stabby* sensations. It's not a pain I can't handle but more of a constant dull ache in both sides but more so on the right side and no matter what I do for sleep or rest, I'm constantly exhausted - more so in the last 2 months yet, I find it increasingly difficult to stay asleep whereas I never had a problem with sleep before.

Like I said before, I have had a few kidney infections, severe pains and blood in the urine before now but that's all the doctor's said it was down to - infection - and half the time they didn't even want to check me out to make sure. It was a case of drinking plenty of clear fluid, take a painkiller, grab a hot water bottle and get some rest - if symptoms persisted more than 24hrs then call us again! Well, in 24 hours time I was normally better but for a good 12-16 of those hours, I was in agony with constant kidney pains, waves of sharp shooting pains on top of the original pain, I couldn't pass urine very easily at all, I had a temperature and fever, I had nausea and vomiting and I couldn't move but, at the same time, I couldn't rest or get comfortable at all. Despite that, I still had to look after my children and had very little help as it was.

In 2008, there was the suggestion to me, by a GP, of having Medullary Sponge Kidney but when I asked what that was, I was told it was 'nothing really serious to worry about' and just a deformity of my kidneys that I was born with. My GP had initially referred me for a kidney ultrasound scan because since 2005/2006 I have had severely high blood pressure which has gone up (mainly) and slightly back down again at times, to the extent that it was a worry for the cause it would have on some of my vital organs. For the most part, I have been given diuretics over the years - then have been taken off, then put back on them again and, even though it takes the edge off the swelling, the temperature and manic headaches (which last for up to 3 days sometimes), my blood pressure remains too high. I kept going backwards and forwards to my GP explaining my problems and even though I was young, relatively active and I had a healthy diet, I was still suffering but through numerous blood tests, eye tests, xrays, ecgs ultrasounds and seeing various different consultants, there had yet to be a reason for my prolonged hypertension. I had also seen a cardiologist, in the meantime and he had prescribed me Amlodipine (calcium channel blocker) for my hypertension but they just made my symptoms even worse so, a month later, I stopped taking them and informed my GP.

Eventually, I was referred to a nephrologist (and an endocrinologist) who, again, sent me off for another ultrasound scan on my kidneys and for more blood tests. On my second visit to the nephrologist, 3 months ago, it was confirmed to me that I did, indeed, have MSK and it was the most probable cause for my high blood pressure and all the aches/pains I keep getting so, I was prescribed ACE inhibitors - as firstly, I was advised to go for my endocrinology appointment before starting the medication then secondly, getting a routine appointment with ANY of the GPs is a task in itself, as you have to wait a fortnight, minimum, for availability and my condition cannot currently be eligible for emergency appointments! I am still awaiting results from the tests, for Cushings syndrome, which the endocrinologists sent me for in the meantime but their view seemed to be that my problems were kidney related.

I live each moment with the anticipation that, in the future, I'm not really going to enjoy my day to day life, as this is a progressive and chronically painful disease - whether the *outdated* research suggests it or not but I also live with the hope that one day we will get some much needed help to enable us a better quality of living.

I didn't end up with Cushings syndrome after all - which is good of course - and I have since been discharged from the Endocrinology unit. However, the tests they did were conclusive in finding out, that I do indeed have Chronic Kidney Disease (Stage 1 of 5) now, as a result of my history of prolonged hypertension (which in itself was due to having the MSK birth defect).

So, to confirm; I have 2 types of kidney disease (medullary sponge kidney & chronic kidney disease) and along with that, I suffer with hypertension, clinical depression & immense fatigue - which in itself is debilitating! To control some of the symptoms & the progression of the diseases, I take a diuretic called Bendroflumethiazide, an ACE Inhibitor called Lisinopril & an SSRI antidepressant called Fluoxetine. I see my GP & get my bloods checked once a month for kidney effectiveness and I currently see the Nephrologist, once every 6 months but I do know that one day my medicines will increase as my health decreases - hopefully it won't decrease too rapidly, as the special diet I can follow & medications I'm on should help with that for a while! It sucks but it could be so much worse I'm sure.

I have found new friends in an online support group, with the same health problems and they are continuously supportive, which gives me extra perseverance. I also couldn't do it too well without the love of my husband, family & closest friends but since I have that support, I am truly blessed and yet, I still take one day at a time.
Cheryl78 Cheryl78
31-35, F
2 Responses May 22, 2012

Hi Cheryl ...I saw your post when I was looking to see if MSK had any connection to high blood pressure and I was amazed how much your story sounds like mine. I have recently found out I have MSK but have had high blood pressure on and off, starting during my pregnancies at 20 yrs of age (I have four children but have had eight pregnancies) and have been on several different b/p meds and hospitalized for high b/p and kidney infections(during pregnancies) since then. I am now 41 have been on b/p meds for several years and water pills and now new meds to slow down my heart to help with my b/p. Since I was a child I had lots of bladder infections, kidney infections where I was hospitalized, almost loosing my first child from infection. I have had both of my ureters repaired b/c they were not formed properely. After years of having issues with kidney and bladder infections and other issues to do with that, I have not had any problems in the last three or four years other then having to pee often and sometimes with mild pain but my blood pressure in these last years has remained high. That is why my family Dr sent me for tests and that showed I have MSK. At present, I have three 5-6mm stones and a cyst in my left kidney and my b/p is still high with meds( usually around 180/98 and I have lots of swelling in my face, hands, feet and abdomen. At this time I am so exhausted all the time. My youngest is still little and I am a single mom, with teens who also need their mom!I would like to gvknow if you have had any answers as to your condition and was your b/p found to be related to your MSK? My family DR doesn't know much about MSK but I am lucky that she is awesome and had been reading up and is sending me back to my old urologist and requesting a nephrologist? see me as well.After babbling on with my story I hope you have found answers and help and that you are well and healthy.

Hi gosh , it sounds like you've been put through the wringer!!
I understand where you're coming fron, on a slightly less of a scale.....
I don't have high blood pressure or heart issues that I'm aware of. This last bout of stones had me in the trauma unit in the hospital as the infection had my fever quite high. Very scary to say the least but , thankfully, they take kidney issues very seriously here in Canada. I was in hospital for 4 days and I got out on the Sunday, Monday morning, my urologists office called me in for an emergency appt Tuesday...I hadn't seen her as she wasn't on call this past weekend but got all of my results so quickly it was amazing. It sounds to me as thouvh you're from England?? my parents are from there originally and you use some of the same words/sayings, is all.
Anyway, I wish you well and though I'm new to this site, I have a good ear if you need one.;)
Take care.

Thank you for your kind thoughts and message - yes, I am in England (well spotted!) but I also have family in Canada & Australia so a bit spread out really! You take care of yourself too & you are also welcome to bend my ear if ever you need someone to listen :)