Hi and Welcome.
Somehow I just wrote a long reply and it did not make it to this post!! That is sooo aggravatiing!!
Anyway, I am a LPHS patient of many years and just wanted to let you know that there are a few that do post here, however, I have not seen anyone post regarding this terrible disease for awhile. Just to let you know your symptoms do sound very familiar and the best advise that I can share with you is to find a really good Nephorologist in your area that knows and believes in the diagnosis of LPHS. Unfortunatly, sometimes the diagnosis is more of a "rule out" type of thing and the ability to get a kidney biopsy is usually vital.
I have been fortunate to have the best Dr's that treat and continue to reseach LPHS working with me. I have been through about every treatment and procedure that has ever been tried.. I do agree with you that the least amount of people that know the drugs that you have the better! Unfortunatly, I have found the best relief is with a continuous drug treatment such as the Fentynal patch with breakthroug meds to help also.
I hope that our posting will bring out other LPHS patients on this forum and you can get some other advise, there are many helpful and caring people here that can make a difference and truely understand.
If there is anything else that I can answer for you or any questions that you might have let me know. I hope that you will be spared this diagnosis, however, if you need advise or a shoulder we will be here to listen!!