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LPHS - any of you still out there?!

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Posted 3/30/2008 10:07 PM (GMT 0)
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

Posted 4/9/2008 7:58 PM (GMT 0)
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!
Posted 4/10/2008 2:58 AM (GMT 0)

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

Posted 4/16/2008 12:13 AM (GMT 0)
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

         

 

Posted 5/8/2008 5:55 AM (GMT 0)
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
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