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New Member

Date Joined Apr 2008
Total Posts : 1
   Posted 4/3/2008 5:28 PM (GMT -6)   
I found you guys thru the LPHS thread and now I cant seem to find it again, where has it gone confused ummm some of the posts looked interesting and I wanted to have a 'chat', my mum has just recently passed away from complications from LPHS and I am pregnant with my second son and was wanting to find out a bit more stuff, can anyone help

Thanks so much :)

Regular Member

Date Joined Apr 2007
Total Posts : 106
   Posted 4/25/2008 10:18 AM (GMT -6)   

I am so so sorry to hear about your mother, if you don't mind me asking what complications did she have re LPHS, I have LPHS and live in Ontario Canada, how long did your mom have LPHS for?, I can't imagine what you have had to go through, I would love to hear from you, you can e-mail me directly or just post on line..

Take Care


DX; Loin Pain Hematuria Syndrome, A Very Rare Painful Kidney Disease,No Cure for this disease at this time, only thing is to Control Pain,
RX, Fentanyl Patch,Amitriplyne, Morphine 

Regular Member

Date Joined Nov 2006
Total Posts : 26
   Posted 4/25/2008 11:33 PM (GMT -6)   
yeah  Hi Ladies,
I am so glad to see some post's going on regarding LPHS!!
Somehow, they did disapear for a while and I am as guilty as
anyone. Sometimes you just get to feeling so bad and so tired of fighting the disease on a daily babis that you just do not even feel like talking about it or aknowledging it. I am so glad to here that holistic meds are giving you good relief from the pain because as we know it is the worst pain that I have ever had to deal with, unfortunatly it has been alot of years for myself.
Any type of relief is sure worth persuing along with any type of drug reduction to you.
I have always been a patient of one of the top DR's that has researched and published many articals regarding the disease.
His has always told me that I would not dye from LPHS so I am so very sorry to here of the loss of your Mother. I am interested in knowing what complications from LPHS occured. I have been on so many treatments and trials but have not heard of anyone losing their fight with this terribal disease.
I am all for keeping posts going on here or possible meeting for a  chat time, or E-Mailing each other and learning how we are all dealing with this.
Once again I am so sorry for your loss and I admire you for keeping up with others who suffer from this disease.
My best to all,
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