Mri

[DeanSamson]

Just got my results back from my 4th Mri scan in 4 years. It's said the there has been no significant change in my kidneys and are discharging me from the urology clinic. Is this a good thing or bad? I liked having the visits to make sure things are ok?

[tillymint16]

Hi Deansamson

It’s not a bad thing you’ve been discharged and your kidney function can be monitored through blood tests every 6 months but why were you having MRI’s was it to check for anerysms.?

Regards Andrea

[DeanSamson in reply to tillymint16]

I have pkd and the urologist sent me therr 4 years ago when I was first diagnosed because I was getting a hell of a lot of pain. Basicly they wanted to see how my condition is progressing year on year in terms of kidney and cyst size. Luckily not much has changed in 4 years. My last blood test nearly a year ago. Came back good said I was stage 1. Only issue I'm having at the moment is my blood pressure is around 135 over 82. I'm thinking thats a little high I'm on no medication for anything and 34 years old.

Thanks for reading

[atropa in reply to DeanSamson]

Hi DeanSamson,

how are your pain levels now? Pain can be completely unrelated to test results. From what you said, it sounds like you're at a very early stage of PKD, and PKD is (usually) a slowly progressive disease, so I'd say that all looks good. Your blood pressure sounds fine, but worth monitoring in case it goes up. If you're in the UK, the usual protocol is to have blood pressure checks and blood tests every 6 months, and to see a nephrologist, rather than urologist. Have you seen one in the past? They may well have discharged you. The pain could have been from infections or bleeds, which would have been an acute thing, but can also be chronic in which case it might be more difficult to treat. What's the size of your kidneys? You could discuss taking Tolvaptan with your nephrologist.

[scott123 in reply to DeanSamson]

I am on twynsta, it works well for me, ask your dr about it

[DeanSamson in reply to scott123]

What is twynsta?

[scott123 in reply to DeanSamson]

Telismartan, blood pressure med, some interesting articles related to PKD out there,, on is ncbi.nlm.nih.gov/pmc/articl...

[DeanSamson in reply to scott123]

Isn't that like tolvaptan

[scott123 in reply to DeanSamson]

no its a blood pressure medication, tolvapatan is a vasopressin inhibitor

[DeanSamson]

Hi atropa,

I do see a nephologist once a year but not sure if that what if been discharged from. My kidneys are 15 and 17cm. Pain has been great for the lay 2 years not much pain and I get to do most things I enjoy. I used to bodybuild before i knew I had this prob the worse sport I could of picked ha. My nephologist did mention tolvaptan but said I'm not progressing enough to take it yet. I do a lot of cycling but with the weather lately I haven't been out maybe that's what the pb is slightly high. Every time I have been check they say I haven't got a infection and never had a kidney stone.

Thanks

[atropa]

I'm surprised they did 4 MRIs - they are expensive! And your kidneys aren't particularly large. Unless there's something I'm missing, I'd say this all sounds fine, considering the circumstances, ie PKD. You got diagnosed younger than average, but seem to be doing ok and no signs to worry about. Hope it stays that way!

[Hidden]

You can be diagnosed at any age. It does not indicate speed of progression or kidney size. Do not get jobs essed by size as the trouble comes from the smaller cysts which can be microscopic.

Ultrasounds are the usual routine scan method.