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This Forum is for patients who suffer from Loin Pain Haematuria Syndrome, their supporters and friends. We also include those who also have IGA and IGM as they are closely connected.
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Title: Valuable Help Available
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carnivalman
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Score: 12
Posts: 12
Registered: 11/06/2004
Time spent: 0 hours

(Date Posted:06/08/2007 05:51:04)

To All who suffer with this dreadful disease, do not give up, there is hope. This my 3rd posting today as I have very strong opinions on how to help anyone with LPHS. We are all in too much pain and need to help one another. My recommendation is for the LPHS patient to be under the care of 3 physcians: a nephrologist, a psycharist and a pain management specialist. If your nephrologist is unfamiliar with this disease, please ask people on the forum for help. In the United States, there are several nephrologists who have published papers in medical journals. Also, there are doctors in England and Canada who have also published information.Good Luck in your search and if can be of help, please do not hesitate to contact me.carnivalman

AngieMuskett
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Registered:26/02/2008
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RE:Valuable Help Available
(Date Posted:26/02/2008 19:14:40)

Hi

I have just joined this forum and would like to as much advise and information as possible.  I believe I have been suffering from LPHS for about 6 years, but have recently been re-diagnosed again.  I am finding it really difficult to accept that I need to take pain relief, and to ask for it, as I feel I may be seen as a "drug seeker".  I don't know how to "move forward".  I am still working full time, and am finding that quite hard at times.  I enjoy working and would hate it if I had to give up work.  I struggle through all day, and "hang out" till I can get home and take some medication.  I am currently on High Blood Pressure tablets, anit-inflammatories, Mersondol Forte (when the pain is not as severe), and Oxycodone.  My dose is only 2 x 5mg tablets, and I am finding this does not get rid of the pain for long - maybe an hour.  I worry about taking drugs, and would prefer not to, but it does not seem like an option for me!!!!  When I first suffered from LPHS I would have "attacks" that would last for about a month, and then pain would ease for a few months, and then I would suffer another attack.  Intially they thought I had stones, but could never find any.  But my lastest attack, which occured early December 07 was extremely severe and I had a month off work and was in bed the whole time.  And now the pain has not gone, it is not as severe, but still extremely painful.  I don't understand why it has changed.  Has anyone else found this? 
I live in Australia, and have found that no-one has heard of this syndrome, except for a physican I have just seen, does anyone know any doctors in South Australia they may be of assistance to me?

Looking forward to hearing from you all, and for some useful advise!  By the way I am 35 years old, with 2 children, 15 year old girl and a 2 year old boy.

Angela
AuntieLarry
2# 



From: USA
Registered:07/11/2008
Time spent: 0 hours

RE:Valuable Help Available
(Date Posted:07/11/2008 18:00:54)

I have LPHS but also Thin Glomular Membrane Disease. I live in NM, USA and have seen 6 doctors but it took traveling ot Dallas, TX to get a diagnosis by biopsy and MRI. Now I have been told that I have to live with the pain and bleeding for the rest of my life. They did take out the upper pole of my right kidney though. No relief. I am a wife and a mother of three, 7 and under, and only 28. I refuse to throw in the towel and accept that this is my fate!!!!!!!
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