PKD Charity for Autosomal Dominant PKD
621 members134 posts

newly told got pkd

ive felt swollen an numb round sides an back for a while gps said it was linked to neck my consultant told me it wasnt so i get gp to send me for ultrasound the person doing ultrasound tells me i have pkd asked if id been tested before yes twice asked if had blood an urine tests yes twice so he said need ct scan this was 4 days ago is this normal

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Hello, as a fellow pkd person, I can assure you these tests are quite in order. The blood and urine tests keep a check on how your kidneys are working and you'll have these regulally. I had them every 3-6 months at the beginning. The scans give the experts an idea of the extent and position of the cysts. There are different stages of the desease; most people are diagnosed around stage 3. You may or may not feel any symptoms but my advice would be to eat healthily drink plenty of water, exercise regularly, go to your appointments and keep an eye on your blood pressure......... then just get on with life. Keeping in touch with other people who are in the same position as you is also really helpful. This forum has lots of people who are happy to share their knowledge and experience so do ask questions....A trouble shared is a trouble halved.....so they say.       Hoping it all goes well for you.....

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are my kidneys suppose to feel real swollen tender to touch and in constant pain 

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I'm not a medical practitioner; just a patient. However, my PKD kidneys are swollen with cysts which I just have to put up with but I wouldn't put up with pain......I would see my doctor and discuss pain relief.

Hope this helps......

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ive been back doctors but feel im being palmed off all time im frustrated and angry as im not getting no help whatsoever 

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know that feeling well.tell them what is wrong and get fobbed off cos they think that because you dont have the symptoms you have based on "allegedly normal" scans

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give up dont care

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