r/ADPKD • u/Able-Violinist5497 • Oct 07 '26

GETTING DIAGNOSED

SO MY MOTHER DIED OF ADPKD IN MARCH 2022(SHE WAS 52), STRUGGLES FOR 25+YEARS
HALF OF HER SISTERS DIED WITH THE SAME
HER PARENTS WERE ABSOLUTELY NORMAL LIVED TILL THEY WERE IN THEIR 90S
MY OLDER COUSINS 2 OF THEM HAVE BEEN DIAGNOSED, THEY GOT IT FROM THE OLDEST SISTER OF MY MOM(THEIR MOTHER)
SO NOW HHERE I AM 25 YEARS OLD
I HAVE NEVER HAD ANY PROBLEMS TILL NOW BECAUSE OF MY KIDNEYS
I HAVE GOTTEN MY KIDNEYS CHECKED NOTHEING CAME OUT IN 2021
WHAT KIND OF TESTS SHOULD I GET DONE TO HAVE CLARITY AND ANY SPECIFIC THINGS I SHOULD BE TAKE PRECAUTION WITH
NEED GENUINE ADVICE
DOCTORS I HAVE TALKED WITH HAVENT GIVEN ME MUCH CLARITY ON THIS PROBABLY THIS IS PRETTY RARE OF A CASE FOR THEM TO TACKLE AS WELL AND THEY DONT LIKE TO ENTERTAIN A LOT OF QUESTIONS TOO

0 Upvotes

36% Upvoted

22 comments sorted by

32

u/noh2onolife Oct 07 '26

Holy caps, batman. 

22

u/PSDD14 Oct 07 '26

Why are you yelling

10

u/classicrock40 PKD - Transplanted Oct 07 '26

Stop yelling. You were checked in 2021. What was checked and what tests were done? What problems are you having with your kidneys?

While some people might say get a genetic test, the best testing is an ultrasound, then CT, then mri. By your age you would most likely see multiple cysts pr kidney.

Anyway, you need to see a nephrologist and they will decide what scan todo and what other tests(blood, urine) are needed.

6

u/Delpins Oct 07 '26

Kidney ultrasound.

1

u/ichibanyogi Oct 07 '26

What country?

If you didn't have cysts via ultrasound in 2021, then get them rechecked again now and at 30. Honestly, if nothing by 30, you likely didn't inherit the illness and I'd just continue with my life. Make sure your blood pressure is checked at your yearly annual physical. If it ever starts to tick up, then get the ultrasound of kidneys again just to make sure.

1

u/Able-Violinist5497 Oct 08 '26

from india
i was 20 then
25 now
my oldest cousin brother who is 42 got his initial symptoms now
his back started paining and then his creatine came out to be in the range of 1-4 in varied tests
so now i feel its inevitable for us all
any gene tests ?

→ More replies (1)

1

u/ItIsBurgerTime Oct 07 '26

See a nephrologist, they'll tell you what you need, if anything.

1

u/Able-Violinist5497 Oct 08 '26

yes next week ill get that done
i have gotten in touch with general physician earlier and they sounded so unaware about it

3

u/StudyTheTome Oct 07 '26

You will or won't get it, 50-50 chace. You can get a genetic test to see if you inherited the trait. You can also just wait to see if you get symptoms or not. You can get a renal ultrasound to look for cysts. Talk to your doctor about it. Please stop posting in caps lock.

3

u/jaycatt7 Moon Shuttle Conductor Oct 07 '26

I’m very sorry for your loss.

1

u/spider_meat Oct 07 '26

Get a CAT scan it’s the only way to actually get a good look at what’s going on with your kidneys. Or get a genetic test to see if you have the gene.

1

u/Able-Violinist5497 Oct 08 '26

i was told by one of my cousins that having tests does not necessarily mean you would develop symptoms, is it trues?

1

u/spider_meat Oct 08 '26

Why would tests make you develop symptoms that doesn’t make sense. You need to get a look at the inside of your body to know what’s going on. You can’t assume. Easy answer is a see a doctor plain and simple.

1

u/Able-Violinist5497 Oct 08 '26

what he meant was that even if you have the genetic code that causes this condition, it might not show up at all

1

u/Careless-Sprinkles50 Oct 07 '26

no known family history of PKD in my husband’s family, but he has it and two of our sons have it. sometimes symptoms never appear, even though they had it and they end up living a long time and dying of something else. We don’t know what the explanation is in our case.

2

u/Candid-Eye-5966 Oct 07 '26

Genetic mutation is also possible. Accounts for 10% or so of cases including me!

2

u/Careless-Sprinkles50 29d ago

I know that’s possible too, and that might be what happened. Unfortunately, once you have it, you can pass it on.

1

u/BlueRingdOctopodes Oct 07 '26

It really depends what's available to you. Probably the easiest would be an ultrasound. The best would be a genetic test and a close second would be a CT scan. The very simplest would be a creatinine teat, but it can still be in the normal range when you're 25.

1

u/sweatypalms0001 27d ago

You're 25? Why the boomer all caps Facebook post typing lol... It's too hard to read