How many people have chonic pain on Medullary Sponge Kidney

I was dignosis with Medullary Sponge Kidney Disease 3 years ago, I have had so much pain on both of my side and back, but my PCP and Uologist said it doesn't cause any pain at all, it must be my back muscle too stiff, so I have seen the Physical Theraphist, too.  Is any of you have that kind of pain?

[ducttape]

oh I hear you.  This last 6 months have been worse then usual.  It so does cause pain, usually from kidney infections, uti and bladder, then of course the dreaded yeast infection.  Stones if they are big will ballon the kidney and have 'rough' travel down wards.  Have they treated for infections and did they clear up?  have you been getting follow ultra sounds at all?

heating pads are the best if that helps.

[bambamm]

The answer to your question is - we all do. Everyone that I've come into contact with on here suffers with daily, chronic pain, me included. Some people I've run across tried massage therapy for a while but found out that only knocks the stones loose for them and makes it worse (their words, not mine). I personally haven't tried it and don't think I want to after reading their stories. Some are on pain meds but say that nothing they are taking gives complete relief. Almost all of us own heating pads and use them constantly which sometimes helps a little and sometimes doesn't. This disease is a mystery to doctors, and many of them aren't familiar with it at all. I've had several doctors look at me like I've suddenly sprouted a second head when I tell them I have MSK. Others you tell shake their head yes, but have that all too familiar vacant stare in their eyes - they have no idea what you are talking about although they don't want to admit it.

The best thing you can do is be an advocate for yourself. Everyone I have run across who has MSK has done (and continues to do) research on their own. Find things you can take to your doctors to support your claims. I am currently in this process myself and plan to bombard my Nephrologist when I see him in March. There has been virtually no research done by doctors on the pain that comes with MSK, but I am hoping to change that. I am working on a project to submit to the doctors at USF Tampa to try to persuade them to start a clinical trial on MSK patients. The goal is to find out WHY we suffer with chronic pain and to come up with treatment options that will work. I have formed a group of MSK patients that live here in FL and are willing to participate (myself included). If we can convince them, hopefully this will open doors for all MSK patients.

In the meantime, talking with others who deal with MSK is an extreme help. It may not help with the physical symptoms, but it helps to know you aren't alone in your struggles and maybe most importantly, that you are not crazy. If all else fails, we have each other to lean on.

Best wishes,
Mary

[Fay53]

So glad to find a recent post on this!  My 25 year old son, who has been sick for a year now, has just been diagnosed with MSK.  He had a sudden bout of kidney stones a year ago- seemingly out of the blue.  He just didn't really get any better, and after an infection last May treated with bactrim?, he has had ongoing abdominal pain with no evidence of passing a stone.  His couple of scans showed multiple stones in both kidneys.  

He lives about an hour from home and was seeing docs there until he was so depressed and tired that we encouraged him to come home to our wonderful, old MD, who spent an hour with him and ordered an IVP which shows MSK.  (I have since found out he never actually saw the urologist in the previous place, it was simply a PA in an office that sees over 60 patients a day.)  Lot of background info, I know, but it serves as explanation as to why he is so discouraged about getting help!

We were worked in to see a Nephrologist the same day we got the results.  He was very business-like, asked a lot of questions, but also didn't dot some i's or cross some t's that would have made me feel a bit more hopeful.  He had the wrong calcium levels (thought they were 10 when they were 10.6) and he didn't mention doing a sterile pyuria test for infection.

But most discouraging, he insisted that the pain that my son has had (constant, abdominal, tender abdomen, nausea, etc.) wouldn't be because of MSK.  He wanted to suggest irritable bowel syndrome and another round of testing by gastro doc.  (grrrr- I am so tired of IBS being the trashcan diagnosis when they can't explain pain in the abdomen!)

How rare is MSK?  How hard will it be for us to find someone who knows enough about it to be open minded?  I am a great believer in being a co-advocate with the docs on difficult health issues and have already read up quite a bit on this.  My husband and I have stepped in at our son's request because he doesn't know what else to do and is greatly depressed because of the pain.  Any info will be priceless to us- thanks!