Misdiagnosed

   Recently i posted that I had been diagnosed with PG, but I wasn't completely sold on the doc's result. So i went to another dermatologist for a second opinion. And right now I kinda wished I didn't. My lab work came back that I had an extremely rare skin disorder cause by crohn's. Granulomatous Dermatitis/Pannicultis. And all of my symptoms seemed to fit with this. The dermatoligist basically called what I had crohn's disease of the skin. I am already having a terrible time with cd affecting my bowel, but now it is a part of what gets me from point a to point b. And the other thing that sucks is that it is so rare that my derm specialist has to see if remicade/humira will be used by my GI in 2 weeks before he will attempt to work on my legs. All other meds have basically been useless. Has anyone on this forum been dx'd with this or anyone know someone with type of ailment. Good news is that they have finally gotten me into a pain management group so that I can at least be somewhat comfortable.

---------------------------------------------------------------------------------------------------------------------------------   Diagnosed with CD Jan '00 while in the military.

   2 Surgeries, over 27 inches of sigmoid removed

   3 Fistula's all in the rump

   To many meds to list plus a small fortune on

    probiotics and aloe treatments.

   Diagnosed with Granulomatous Dermatitis

   Pannicultis Aug '08

  Hi Gail... Well right now I am just coping with the new found wisdom of my new diagnosis. I have been doing alot of soaking and keeping the sores extremely clean. I am being told that there has only been as many as 100 people diagnosed with this skin condition and even fewer than 25 that have cd. I am finding out that zinc compressess and steroid injections into the sore are some of the treatments, but they want to see if remicade or humira might clear it up. It is extremely painful to walk... I feel like I am a dead man walking sometimes. I have broken many bones in my short lifetime and several other trauma's, but this one takes the cake.. All of the pain comes from the bone to the muscle and tendons and then the skin. My legs feel like they are always in a cramp all day. My veins around my ankles and feet are constantly pertruding out and my feet stay swollen to where I have very limited motion. To me its like walking with both of my ankles broken and no support for them. And my achilles tendons won't extend, so it like I have to walk flat footed all of the time which leaves me wearing flip flops most of the time. Wearing shoes is very painful.

   Hi Matthew and thanks... Since I was dx'd with cd i have gone through so many curve balls.. this is just the most recent and most devastating. I am still in awe how ten years ago i had never even heard of crohn's... now it is the focus of my life, other than my wife and child. it has also affected my eye sight and parts of my liver.. doctors always have a field day with me when I enter the hospital!!!