I would have no advice on this one other then visiting us in the states to see specialist.
I just wanted to welcome you to HW. We have alot of information we can search through. I know you might have done this already but have you considered full googles searchs. I know this can take hours and hours out of your time. But you might be able to find someone in the UK who is educated in this condition..
I hope you find the help you need and I will keep you in my prayers.
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all