hello everyone! I am hoping someone can shed some light on this for me. I was diagnosed with ADPKD possible type 2 about 6 months ago. As far as I can tell no one in my family has ever had it.
My sisters are being tested now. In February on 2016 I had an abdominal ultrasound and the report reads in part: "no obvious solid or cystic lesions of the kidneys are noted" In 2018 I am told I am loaded with cysts and may need to try this new medicine....Tolvaptan.
I have no symptoms except for chronic pain in my lower left back. My kidney functions are normal. Is it possible there has been a mistake made somewhere? I was diagnosed from 2 MRI's done in August of 2017 and February of 2018.
Many thanks for any help you may have. I have this low level fear in my heart every waking moment.
A small number of people, about 5% of cases gain pkd through genetic mutation which appears to be your problem. Having it means you can pass it on despite being a mutation case. The back pain is very likely to be pkd. The 2016 scan may not have been done properly as cysts do not suddenly appear however in type two they appear later in life. You would need to assess all three scans to be certain. Be aware cysts can be microscopic and ultrasound machines may not pick up small but visible cysts say 1 or 2mm so the answer is not certain. Whatever the facts remain unchanged sadly. Genetic blood tests would have showed it up. I have type 1 and am on dialysis and 70% of my mothers side of my family so I do know quite a bit about the disease. My brother is on tolvaptan and participated on the trial. Its a good drug if you can take it and does reduce cyst size but can affect the liver a little and you must drink a lot of fluid. There are other things you can do to help get the cyst reduction but as yet tolvaptan seems to be the best. Avoidance of caffeine and nsaids plus careful blood pressure management can also help a bit. Good luck.
Thanks so much for this reply. I think I am in total denial because I have no symptoms,
not even high blood pressure.....just the back pain. I did fax that report to my nephrologist so he can see where it says I had no cysts in 2016. Thanks Mark!!
There's no good evidence for coffee being harmful in PKD.