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When to get diagnosed for PKD
confusedaboutpkd posted:
I have family history of PKD. When I was pregnant with my first 13 years ago, we saw the cysts on the kidneys and liver during an ultrasound, but I was not diagnosed (at my request). The only symptoms I have now are back pain and swelling in my stomach. My stomach has gotten quite large in the last 2 years and I have trouble with the pressure, bending over and after eating. I'm not sure when I should go see a doc to get an official diagnosis. Blood pressure is reasonable and creatinine levels are still within normal range. Any suggestions?
MrsCora01 responded:
I would definitely get tested. While I don't know a lot about PKD, I have a friend whose entire family has it. Apparently it is also associated with aneurisms. If her sister hadn't gotten checked when she did, it may have ruptured and she could have been in really serious trouble.

You can't just go by bp and creatinine. You should have a thorough checkup. Just my opinion.

confusedaboutpkd replied to MrsCora01's response:
Thank you Mrs Cora.
Tikasiamese responded:
I was diagnosed with it in October 2009. I do not have family history of PKD and have a mutant gene. I went for an ultrasound and is was discovered that I had PKD. I am sure it was diagnosed at your ultrasound during your pregnancy. I do not have any symptoms as you mentioned above, at least not yet. Sounds like you may have the classic symptoms of PKD and I would get a diagnoses ASAP. You also should see a nephrologist who can better track your care. What my primary was concerned about was my fluctuating blood pressure (one day it would be 120/80, then I would have a string of 130/90 readings). That is why I had the ultrasound. My creatinine levels are about 1.7 so they are still pretty good and my GFr (kidney function) is at 43%. Its best to know those numbers by heart when you have your next blood test. If your doc hasn't checked, its wise to get it. I just had a CT scan without contrast dye and the cysts are now spreading to my spine. Then I had a bone scan done last week and have yet to see those results. Its turning into a summer of tests and dr appts.
confusedaboutpkd replied to Tikasiamese's response:

Sorry to hear about this. I hope it all works out for you.

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