Medullary Sponge Kidney Disease (MSK) Community
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This patient support community is for discussions relating to Medullary Sponge Kidney Disease (MSK).

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I had no idea that Medullary Sponge Kidney was even a form of Kidney Disease until recently when I was hospitalized for an infection that was resistant to antibiotics other than through IV. I am 20 and was diagnosed when I was 18. I have had awful infections since age 15, most of them I was hospitalized and they had entered my bloodstream. I feel like lately it has been even worse. I have moved from Ohio to Florida but have no diet changes, if anything I have drank more water and cranberry juice. Last month I had an infection that was so bad I had to be hospitalized for three days and then after that my body was so messed up that I now have muscle spasms in my back and had intestinal issues. I don't know if there's any way MSK can start to get worse but I definitely feel like it has. I am down in Florida trying to enjoy my Disney College Program experience and have spent about half of it in and out of the ER. I finally started to feel better and now today I have felt awful again with terrible back pain. Trust me everyone, as a young female I understand the frustration of constant pain, especially when you have to tough it out and try to continue to work and live a normal lifestyle. It gets frustrating to you for many reasons and it isn't fun when you are constantly in pain and have to rely on your friend's help which starts frustrating you. I didn't even know there was a support group but it's nice to know that I am heard for once. It's not fun laying in a hospital bed saying you are still in pain and the nurses and doctors saying that they aren't going to give you pain meds because you should no longer be in pain. Unfortunately they don't really understand MSK and how the cysts make infections very painful. I hope everyone has better luck than I have lately and I hope that once I return home to Ohio I can have some helpful tips from my Kidney Specialist. Good luck to you all.
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Avatar_f_tn
I understand where u r coming from. I am 24 nd just found out I have MSK. I am currently in the hospital for infection nd urinary retention nd not being treated but with Tylenol.  A normal life.....I don't know what that is. Doctors claim to understand this disease but they really don't. They tell me im not in pain cuz its not in my urethra tube. My irritation level is 10. Im laying here in pain with a full bladder.
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Avatar_f_tn
i'm sorry to hear you in the hospital and in a lot of pain, i hope you feel better soon. find yourself a good nephrologist who does understand this condition and is willing to help you through this. where are you located??
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Avatar_m_tn
I am so happy I found this forum! I was diagnosed when I was 27 due to having a CT scan for stones I had. Im reading your comment and it sounds so familiar! People (doctors included) just do not understand this disease! I am struggling to understand it because I can not seem to find a doctor who truly knows what I am going through and the pain Im in. I go to the ER probably 2-3 times a year due to extreme pain. Im sure there is blockages but more times then not Im told that even though there are stones in my kidneys there are no blockages so they do not know what is causing the pain! I just thought well maybe Im turning into a hychondriac in my old age lol (Im only 34). I am so sorry your going through this but please know you are not alone!
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168348_tn?1379360675
WELCOME to our MSK community everyone!

C~
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Avatar_f_tn
I was told by numerous drs that anyone with kidney disease CANNOT have anything with CRANBERRIES in it. We can't have the phosphate.
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168348_tn?1379360675
Sometimes doctors will suggest we do take cranberries versus constant antibiotic use to control back to back UTI's (infections) but at the same time usually other things like magnesium, Vit B6 is also used which help thwart off stones.  It's such a fine line .. the oxalates versus no oxalates when chossing what to eat, too, etc.

C~
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