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Newbie to Forum - Help with Nephrocalcinosis

Posted: Mon Apr 10, 2017 3:56 pm
by Missprudence

I am new to this forum, but it feels quite refreshing to be able to engage with people suffering with similar problems and have an understanding, how everyday life feels :cry:

Last year I was diagnosed with Nephrocalcinosis. I have suffered with Kidney pain and recurrent UTI for the 18 years, there was never really an answer, until I threw a tantrum and finally got referred to a specialist. My right kidney is severely scarred due to the amount of infections I have (at least one a month). My right kidney is the worst with only 30 % function. I suffer with chronic pain and I will be honest I am now totally depressed living a life with UTI and pain.

Last month I saw a consultant at the Royal Free and he is confident that he knows what might be causing the calcium build up, and if he is correct, medication will minimise this process. However, there is no way they will be able to get rid of the calcium deposits in the kidneys. This has left me feeling really fed up, because I can not imagine the rest of my life like this.
Any advice, any one with the same condition it would be great to talk too.
Many thanks

Re: Newbie to Forum - Help with Nephrocalcinosis

Posted: Tue Jun 20, 2017 3:14 pm
by wagolynn
Hi Missprudence,

The positive part is you have at last reached a nephrologist which gives you a chance of having some relevant treatment.

Let's hope the medication bring some relief for you, from what I read it should help.

I am not sure if you have read this

It appears to offer various options for your treatment.

Best wishes.

Re: Newbie to Forum - Help with Nephrocalcinosis

Posted: Sun Jul 22, 2018 8:13 pm
by Laurawill
Hello All

I am looking for advice please if possible, I had a scan few months ago and informed I have bilateral nephrocalcinosis, I received this by a letter and not due to see my urologist nurse until December is this normal practice?
I have renal stones too and live in pain and discomfort and bloating on belly area and upper thighs, im not sure if this is connected to the diagnosis.
Any advice would be greatly appreciated please.x

Re: Newbie to Forum - Help with Nephrocalcinosis

Posted: Mon Jul 23, 2018 3:15 pm
by wagolynn
Hi Laurawill,

If what is happening to you medical-wise is unclear, call your urologist nurse to ask what is going on, and why.

It may be they have decided to wait to see what happens but it is better if you know.

Best wishes.