Medullary Sponge Kidney Disease (MSK) Community
Does this sound like MSK?
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Does this sound like MSK?

I am in SO much pain and it has been coming back here and there whenever it wants to for the past 6 months.

Started in May, after 2 weeks of pain I went to the hospital. Low level of blood in my urine. Doctor said it was kidney stones. Sent me to get a CT scan... didn't show any stones. I felt something move from my kidney to my bladder 2 days after the scan. Pain resided a little bit... just maybe a sharp pain 2-3 times a week.

Beginning of Sept the pain came back severely so I went to the hospital again. This time they found a lot of blood in my urine (Level 3+ which is the highest level I hear) and ordered me another CT scan... came back normal. Again, felt something move 2 days after my scan... pain gradually went away but not completely.

Doctor has no idea what I have a lot of blood in my urine and in so much pain with normal CT scans... so he referred me to a urologist... I made an apt and I can't be seen until Nov 20th.

The pain came back yesterday... a lot of pain today. I am SOOOO frustrated having all this pain with no answers. I am getting really worried that this pain has been lasting for 6 months off and on.... and what is with all this blood in my urine?

I am not sure if this has anything to do with the situation... but I get UTI's often!!


Does this sound like MSK?
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592774_tn?1325397342
Wow, you are going through it! I am so sorry for you. It sure does sound like a stone. I am not sure about MSK or not. People can have kidney stones and not have MSK. It sometimes takes years to get a diagnosis of MSK.
There are some stones that do not show up (uric acid stones). Have they tested your uric acid levels? Do you have any gout symptoms? I have high uric acid and my big toe gets sore, but never swells or gets red and hot. Other joints  sometimes develop mild gout symptoms, mostly my knees or shoulders.  Only one joint at a time.
If you have higher than normal uric acid in your urine or blood maybe they will consider speeding up your appointment, assuming it is a uric acid stone.

If you go to the er again, maybe you can request/suggest IV Toradol.  It is not a narcotic so it should not make you look like a "Drug Seeker".  It works great for some people with kidney stones and does nothing for others. It works great for me and does not make me drowsy.

Did the ER give you anything for pain? I have to take a muscle relaxer or valium with strong pain medicine when I am passing a stone.

Feel Better!
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192055_tn?1263559137
Thank you so much for the response! How is MSK diagnosed? Does it take years to diagnose because it is over looked or because it is hard to see?

This is the first time that I have heard about gout. I looked it up...  I have mild arthritis in my collarbone joint- I had a sternoclavicular joint repair surgery (collarbone and breast bone joint kept dislocating constantly) I still deal with pain in that area here and there. That is really the only place though and I don't have other symptoms really.

I may have to go to the doc again... pain meds are getting low. They gave me codiene which seem to work alright. Not today for some reason... made me feel calmer but still had pain... I don't take them too often either.

Thank you for the advice of IV Toradol... that is good that it isn't a narcotic and that it will help with pain!!


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489228_tn?1291535054
Actually if you have had an IVP that is the most classic way to diagnosis MSK.  YOu will often have the typical patterns of many stones within the collecting ducts.  Has your doctor performed an IVP on you, with tomagrams?  (Which just means x-rays that rotate the camera to all angles).  If so get the report.  If you have MSK, it will be on the radiologist report even if you doctor does not tell you, which yes happens!

If there is no stone it very likely be chronic infection!  Have you tried a long round of antibiotics like at least 3 weeks to see if that clears up the pain and blood?

I have blood in my urine which is often my only dipstick symptom of infection!

Shelly
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192055_tn?1263559137
Thank you for the response! I have not had an IVP done... but I hope that it will happen when I go to the uruologist.

The tests came back with just blood in my urine... no bacteria or anything else showing that I don't have an infection.

"I have blood in my urine which is often my only dipstick symptom of infection! " Are you saying that even with just urine, it shows that you have an infection?


What i hate the most is the sharp pains... its happen only about 4-5 times in the past 6 months since the symptoms first showed up. The sharp pains that I am talking about makes my whole body twitch in pain and it usually makes me scream. Last night I was laying in bed with my husband and my whole body jumped and I screamed... def freaked my husband out!


Any idea what these really sharp pains could be?
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635342_tn?1222729339
I get that sharp pain on my side when I have urine blockage from a kidney stone. Even when I don't have blockage and just have a kidney stone I have that sharp, terrible pain too, but it tends to be way worse when there is blockage.

Also, I've had a kidney stone that didn't show up from an x-ray and ultra sound but did show up from cat scans. I heard sometimes kidney stones don't show at all..but people end up passing them. Hope this helped atleast a little bit!
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489228_tn?1291535054
Yes... stones often don't show and then pass right after the tests.

And if you read many of my previous posts you will also find that infection does not show up with us often by the standard methods or dipstick or culture, because the infection is actually deep in the stones.. and now I have learned in the damaged tissue or collecting ducts, in a biofilm infection.  If you read many of my posts I explain that in more detail.

If it were me I would see if trying a round of antibiotics makes the pain subsides!  A lot less invasive then going in for a scope or surgery and when you in that much pain we all know something is going on.

There is also a procedure I have posted on this board specifically for MSK and chronic pain however I would rule out other things first!

Shelly
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