hi all - new to the group. 27 yr old male from ny, ny. i have been a contributing member to the hemochromatosis group since learning of that diagnosis this past summer. for those familiar with this iron overload condition, i had an extremely high ferritin level of 5200 ng/ml as of July but i have made significant progress through phlebotomy treatment (43 of them to date) and I now have a 616ng/ml count. probably a few months of blood-letting to go. anyway, in the process of checking my organs for damage from the iron, an MRI revealed many cysts on my kidneys, citing "high suspicious of PKD". just today i had a sonogram performed which confirmed their prevalence. the radiologist cited that i have many more cysts than she typically sees in patients with cysts - not sure what that means - felt ominous. i saw one of the images and although i didnt really know what i was looking at, the radiologist point out many black blotches, some sizable... anyway, i am meetign with a nephrologist on Monday. Neither of my parents have PKD - they are 61 and 62, have normal kidney function and have no significant visible cysts (both have also had renal sonograms) - and, full disclosure, my dad acually has one or two cysts. How can i tell if i acually have PKD. i read that a small % of cases are not inherited from parents. is there a specific genetic test i can take? maybe the gene has not expressed in one of my parents? i do not have high blood pressure (although it is higher than usual for someone of my age and size and fit). i have experienced stomach pain but that is also a symptom of hemochromatosis... anyway, i am looking for guidance here. how would i actually confirm the diagnosis?
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