That sounds just like how my visit with the doctor went as well, I found I have PKD back when I was 16, and I cried a bit on the way home. Going to doctor after doctor and hearing bad news just gets so old, but sometimes it's just what we have to do. Some people are just born with problems that can't be solved. I'm sorry you're another person that has to go through it as well. I also was recommended to get an MRI of the brain done because of my frequent headaches, which I've had since I was a kid and still get now. The MRI showed that I have a cyst in my head, but the doctor said that it isn't anything to worry about. It still bothers me sometimes though considering how often my headaches are. Don't feel alone though because I went through that same situation pretty much, it was a bit scary but nothing too bad came from it. I'm curious to hear about the results from your brain MRI if you do get it done, if you don't mind sharing of course.
Good luck

Hi Marios,
First of all, I'm sorry that you've had a positive diagnosis, but it sounds like you're doing well in terms of the kidneys and can indeed try not to worry about them for now. Who knows what all the mysterious pains are that we're told are not from the kidneys. Sometimes it's too much to try to fathom. I know what you mean about finding something else to concern you every time you see a doctor. I've reached a point where I really have to have justify further investigations before I agree to them, as life can become just too medicalised. I'm currently resisting a gastroscopy which the GI consultant has agreed to following referral from the renal consultant. My problem is I haven't been seen by the GI consultant. I'm not happy to have a procedure before fully establishing the need and wisdom of doing so.

My renal consultant also wanted me to be screened for brain aneurysms because of the increased risk in those with PKD, but that's another thing I said I would think about and didn't pursue. My reasons are based on nothing more than I can't face it. If I have any symptoms I will have the MRI scan. Many on this site have encouraged me to have all these tests, but ultimately it's your decision. You would be wise to have the scan given your headaches. If it's clear your mind will be put at rest; if anything is found the problem can be addressed or monitored.

As for whether you should change anything, I think we've discussed the main issues ie. follow a healthy, low salt diet to help keep blood pressure down; avoid caffeine; drink plenty of water; take regular excercise and don't take NSAIDs if you have any pain. Otherwise, there's nothing much to do except carry on living your life.

Keep in touch with us,

Chewitt

Thank you both. I talked to my normal Doctor about everything. I think I'll get the MRI done but not going to do it this month. Once I do all share the results. I have already been in the MRI machine 2 twice in the past 3 months and just not ready to go in a 3rd time. I've also gone to a pain clinic for my pain and last time their they suggested getting an epidural injection in my Back to see if that helps. So I think I'm going to get that a try.

I have been doing Physical Therapy since February because of my pain. They are the pain reason why I found out about PKD because they refereed to be a Doc for an MRI because of my pain. So glad they did.

Just wanted to let you know I finally decided to go get the Brain MRI/MRA today. So will have results results 1 week or so. Not trying to stay calm and relaxed before I get there. I remembered to grab a CD with good music to bring.

Good luck! Let us know how things go.

Chewitt

Got results back no aneurysm. But they found something else not related to the PKD that I have had since birth. It is not serious but explain something I have been dealing with since I was younger. What I found out I have is agenesis corpus callosum.

Thanks for coming back to us Marios. It's good news that there's no aneurysm but must have been quite a surprise to find out about the ACC. I hope that this doesn't affect you too much. This is what happens with medical investigations. My PKD was discovered when I had a scan on my hip.

Keep in touch,

Chewitt

Welcome Marios

My PKD was diagnosed when I was 23. Now I'm 64 and still have 20% kidney function. You didn't say how old you are but medical science is moving so fast there will likely be great changes by the time you reach your 50's. I couldn't believe that I will be able to do dialysis at home overnight with a machine small enough to sit on a bedside table. When my dad had dialysis in 1963 the same machine took up a whole hospital room and had to be done in hospital. Lots of new research too on prohibiting growth of cysts.

Not really much you can change at the moment that will make a difference. Just keep an eye on your blood pressure is the biggest thing I guess. Glad to hear you don't have an aneurysm. I've never heard of ACC but just follow doctor's instructions.

Shirley