LPHS - any of you still out there?!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Koorahk
Regular Member


Date Joined Feb 2006
Total Posts : 37
   Posted 3/30/2008 3:07 PM (GMT -7)   
eyes  Anyone out there with LPHS? I haven't been on this forum for quite some time re LPHS and have lost touch with some of my fellow lphs'ers! Please feel free to e-mail me, anytime!
 
Came onto the forum a few weeks ago, after fracturing my 5th metatarsal base and lateral ligament complex injury (right foot/ankle) in December last year!
Still having problems and getting very, very fed up now - 16 weeks since initial injury and I still can't get my everyday shoes on!
 
Take care all of you,
Koorahk x


Diagnosed with lphs (loin pain haematuria syndrome)in 1981, by renal biopsy -causes severe kidney pain/renal colic, relieved by opiates - currently dihydrocodeine, Tramadol and Pethidine (Demerol)
 
Recently had injury to right foot causing 5th metatarsal base fracture and severe lateral ligament complex injury of right ankle
 
Helen
Koorahk Cattery, UK

Post Edited (Koorahk) : 3/30/2008 4:12:39 PM (GMT-6)


Porteyoz
Regular Member


Date Joined Apr 2008
Total Posts : 33
   Posted 4/9/2008 12:58 PM (GMT -7)   
Hi, I'm new here, and I too have left flank pain (haven't officially been diagnosed yet w/ a kidney bx) because I have other issues with ureter,stones and complex cyst inside the medullary region of left kidney (per Mri x2weeks ago). I have all but diagnosed myself with LPHS..I have constant pain in flank w/ hematuria and occasional spasms (like when passing a kidney stone) I always thought "as soon as they get rid of stone, clean out the stricture,fix the reflux, etc...I will be pain free" well,that was in 99. I take Norco 10/325 up to 6/day prn, but am being switched after ct scan (being done this sat) my next pain management appt is on the 25th. That is the only medication I take, other than antibiotics for the kidney infections I get about 1x/mo. That's my story...do you think it sounds like LPHS? have a great day and I'm soo glad to have found this site. I always thought I was the "only one" who had this terrible pain in my flank (I can understand neck/back injuries,etc...) but now I realize many years later that lots of people suffer w/ this too!

ravenhairedvixen
Regular Member


Date Joined Jun 2006
Total Posts : 108
   Posted 4/9/2008 7:58 PM (GMT -7)   

Hi Helen!

 

  Its Heidi from Ohio. Remember me?? I've missed you, and have thought of you often. I read the post you made a month or so ago, and was sorry for your additional pain. I can relate, because now I am having severe joint pain from the Lupus. I actually just got out of the hospital last week for my fifth port infection that went septic. I now have a picc line {my third}, and it is thought that it will be less likely to cause a serious infection. These infections wouldn't be so bad, but you always have to have surgery to remove the infected port, and the last two surgeries have left me with rather large "holes" in my chest that have to be packed, and take two or so months to heal. Unfortunately, you have to pack the wound every day, and its painful. So, unless something different occurs, I will never get another port.

  Anyway, I just wanted to pop in and say, "Hi". I hope you have a low pain day tomorrow. Also, how are your son and husband?

 

  Love,

  Heidi

 


cyndilphs
Regular Member


Date Joined Nov 2006
Total Posts : 26
   Posted 4/15/2008 5:13 PM (GMT -7)   
Hello again to LPHS'ers!!
I recentley posted again after a very long time of hanging out on the board but not actually seeing to much posting on LPHS..
I think that it would be great for all of us,or anyone thinking that
they might have this disease, to start posting again.
This disease is so rare and undertreated sometimes, that to just
know that their are others out there makes me feel stronger to know that I do not face this alone.
 
I would love to see more posts and questions that might help each other out a little understanding this ugly disease.
Unfortunaly, I also suffer with Lupus along with LPHS so I am not
always feeling well enough to always be on here. However, please
let us all try posting end e-mailing each other as much as possible. Maybe we can master up a chat time to for all of us to participate in?
 
Please let me know if anyone is interested in any of these ideas and how many would be willing to participate.
 
Hugs,
Cyndi
         
 

LPHSmom
New Member


Date Joined May 2008
Total Posts : 1
   Posted 5/7/2008 10:55 PM (GMT -7)   
Hi there I am new to your group. I have LPHS and thin basement membrane disease DX by biopsy on 2-22-08. It is late, my family is sleeping, and I am in too much pain to sleep,, again!!! I have a long Hx with my kidney problems, including 12 surgeries, one removing the upper 3rd of my right kidney! I am writing to find people who really understand what I am going through and maybe have some advice. Thanks anyone who takes the time to write


Take care! All my support to you!
LPHSmom
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, December 06, 2016 9:15 AM (GMT -7)
There are a total of 2,733,490 posts in 301,128 threads.
View Active Threads


Who's Online
This forum has 151264 registered members. Please welcome our newest member, bvail.
343 Guest(s), 18 Registered Member(s) are currently online.  Details
john16, schoolpsych, NiceGuyEddie, Bobby88, NewspaperLover, Starlight*, Tickled6, Sherrine, Tudpock18, Faustmann, Jay79, DennisinNY, maria2016, ks1905, Traveler, kcsmith72, kodaska, straydog


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer