Fusty find out

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Hi I just found out about 2 weeks ago I have N.S. I don't know to much about it. I am not on any medication as yet they are waiting for more results. Can you please tell me more or give me any advic

e. Thank you

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  • Posted

    Nephrotic Syndrome is not actually a disease. It is a collection of symtoms hence the word 'Syndrome'.

    The main symtom is loss of protein through the kidneys. No one knows why, it may be congenital. The number of victims increases however, and if it were congenital one would expect a steady population of victims presenting with this condition. Reason for the protein loss lies in the structure of the kidneys themselves. My advice (which is probably valueless) is to maintain your health and weight as well as you possibly can. Zero salt, zero alcohol and drugs, quality food and exercise, healthy mind and body. Not easy to achieve, well i didn't make it anyhow.!  Word of warning, you may well be targeted by individuals pushing 'cures' that are guaranteed to cure this condition. Don't believe it. There are people who care nothing for anyone who will push any expensive suppliments. which are probably worthless at best. Find a specialist and stick with their advice.

                                        Good luck,  E.


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  • Posted

    Hello - I was diagnosed a couple of years back.

    Short version - the protein leakage was not sufficient to warrant any heavy meds and the consultant I see decided to try me on low dose blood pressure meds that protect the kidney plus a statin to keep my cholesterol in check. The kidney disease pushes up cholesterol. I have been incredibly lucky and am in remission currently.

    What I have learned is the the disease varies hugely in its impact on people depending a range of factors. 

    I had real trouble with all of the statins tried  - really nasty side effects and now take ezetribe. Otherwise all ok.

    I found this site invaluable and that people are very generous in offering their own experiences with meds and medics.

    Arm yourself with knowledge.

    Good luck and stay well - John

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