Guest guest Posted June 19, 2004 Report Share Posted June 19, 2004 Dear , Thank you so much for maintaining this wonderful group. I am so grateful for all the knowledge and insight in our database. You make an excellent point regarding PG, and its link with EN. I experienced it myself, and would like to share and include a word of caution. I've had EN since age 12 and it would come and go, every year or so I'd get a red bumb on the shin (both left and right leg were affected equally). With hindsight being 20/20 I can say that I never took it as seriously and I should have, and never did much research on the nature of this condition. When in the fall of 2002 I got another bumb on my right leg, I didn't think much of it. But as the weeks went by I noticed that it was starting to look a bit different from the usual EN nodule. A small area at the very top of the bump turned blue, and later a blister developed on that same area. I immediately made an appointment with my GP. Unfortunately, this doctor did not know very much about EN and its related conditions, he pierced the blister, told me to wash the area with soap and water and sent me home. For the pain, he recommended Advil. Three days later I woke up in the middle of the night with a very high fever and a large ulcer where the EN bump had been. My roommate called 911, and I was taken to the emergency room of an area hospital where I stayed for a month. It took a long time before a rheumatologist at the hospital diagnosed my condition as Pyroderma Gangrenosum (unfortunately, the plastic surgeon had already performed a debridement surgery on my leg and removed the ulcerated area as well as the surrounding tissue by that point - he was going on the theory that the ulcer was caused by some sort of infection). When I was finally administered steroids in my IV, I began the very long road to recovery. I'm happy to report that currently I am off steroids, my leg is healed up, and although the large scar on my shin is a bit unnatractive I feel grateful that I have two good legs to stand on. I read a very scary article about a woman who had her leg amputated because the doctors didn't realize it was PG, an auto-immune disorder, and thought it was an infection. My experience was difficult and painful, but it could've been a LOT worse. I just want to give a friendly note of warning to anyone who has EN - the red bumbs should NEVER be cut, pierced, or otherwise traumatized in any way (unless its a biopsy under supervision of a very experienced dermatologist). Peace and good health to all! Enjoy the beautiful weekend. -Margarita (idiopathic EN since 1991, idiopathic PG 2002) PS After reading the post about amalgam fillings (mercury in the silver) I am seriously considering getting my silver fillings replaced with white ones. (Just to be on the safe side... and the white ones will look better as well > Dear Jeff, Christy and Group, > As I may have noted I recently discovered that our EN Group comes up > on a search for PG Support. There doesn't seem to be a specific Group > for PG. That being the case, I think we need to flesh out (no pun > intended) our PG resources. I think one way to start is to keep our > own Q and A forum on the EN Site. I will start this by locating our > old posts on PG and putting them in to a PG Forum Folder. I will > attempt to organize this so members will be able to read what has been > discussed before, and add to the topic as their experiences and > knowledge grows. Yahoo Groups isn't set up like a forum with threads, > but we can certainly keep the topics in an orderly fashion for future > reference. I don't know how many current members have PG. I don't like > to frighten anyone, but we have heard stories of those who had simple > EN only to get blindsided by PG. We all should have this reference and > a bit of knowledge of this related disorder. > Does anyone have any suggestions? > Wishing you all a great weekend! > Love, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2004 Report Share Posted June 19, 2004 Dear Margarita and Group, Thanks for those very kind words and for telling us all your expereince with EN and PG. I note that you are " idiopathic " meaning no other pathology or trigger has been found for either your EN or PG. I know those of us who are idiopathic are led to believe by doctors that our EN is an inconvenience or as my doctor put it " of no significance " . Well, here is proof that this attitude and belief is incorrect. Just because you don't have Crohn's doesn't mean your EN will not turn up as PG someday--even as much as 10 years later. We certainly don't know what to do to stop this from happening, but we can all and I think we must all be knowledgeable in what PG can look like in its earliest stages and be especially aware that it is not an infection and must not be treated as one. Reading and understanding this one sentence alone may save your legs. I have been working on the PG Files and I added your story to it, Margarita. It's a work in progress, but will fill out like the rest of the site. Thanks again to you and all those who have contributed so much to help others. Don't be surprised if when PG is cured EN falls by the wayside. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2004 Report Share Posted June 20, 2004 rebecca, great idea. thanks! jeff > Dear Jeff, Christy and Group, > As I may have noted I recently discovered that our EN Group comes up > on a search for PG Support. There doesn't seem to be a specific Group > for PG. That being the case, I think we need to flesh out (no pun > intended) our PG resources. I think one way to start is to keep our > own Q and A forum on the EN Site. I will start this by locating our > old posts on PG and putting them in to a PG Forum Folder. I will > attempt to organize this so members will be able to read what has been > discussed before, and add to the topic as their experiences and > knowledge grows. Yahoo Groups isn't set up like a forum with threads, > but we can certainly keep the topics in an orderly fashion for future > reference. I don't know how many current members have PG. I don't like > to frighten anyone, but we have heard stories of those who had simple > EN only to get blindsided by PG. We all should have this reference and > a bit of knowledge of this related disorder. > Does anyone have any suggestions? > Wishing you all a great weekend! > Love, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2004 Report Share Posted June 20, 2004 hi margarita and others, you make some excellent points. i am amased at how close your experience is to mine. luckily i was able to avoid the surgerical trama, not that a few docs i have had didn't try. i harp about these all the time when i discuss with new pg'ers. docs should know better! proper dx is sooooooo important! pg has a characterisic known as " pathergy " . the more it is aggrivated, such as your surgeon did, it spreads like wildfire. we need to keep getting the message out. jeff > Dear , > > Thank you so much for maintaining this wonderful group. I am so > grateful for all the knowledge and insight in our database. > > You make an excellent point regarding PG, and its link with EN. I > experienced it myself, and would like to share and include a word of > caution. > I've had EN since age 12 and it would come and go, every year or so > I'd get a red bumb on the shin (both left and right leg were > affected equally). With hindsight being 20/20 I can say that I > never took it as seriously and I should have, and never did much > research on the nature of this condition. > When in the fall of 2002 I got another bumb on my right leg, I > didn't think much of it. But as the weeks went by I noticed that it > was starting to look a bit different from the usual EN nodule. A > small area at the very top of the bump turned blue, and later a > blister developed on that same area. > I immediately made an appointment with my GP. Unfortunately, this > doctor did not know very much about EN and its related conditions, > he pierced the blister, told me to wash the area with soap and water > and sent me home. For the pain, he recommended Advil. > Three days later I woke up in the middle of the night with a very > high fever and a large ulcer where the EN bump had been. My > roommate called 911, and I was taken to the emergency room of an > area hospital where I stayed for a month. It took a long time before > a rheumatologist at the hospital diagnosed my condition as Pyroderma > Gangrenosum (unfortunately, the plastic surgeon had already > performed a debridement surgery on my leg and removed the ulcerated > area as well as the surrounding tissue by that point - he was going > on the theory that the ulcer was caused by some sort of infection). > When I was finally administered steroids in my IV, I began the very > long road to recovery. > I'm happy to report that currently I am off steroids, my leg is > healed up, and although the large scar on my shin is a bit > unnatractive I feel grateful that I have two good legs to stand > on. > I read a very scary article about a woman who had her leg amputated > because the doctors didn't realize it was PG, an auto-immune > disorder, and thought it was an infection. > > My experience was difficult and painful, but it could've been a LOT > worse. I just want to give a friendly note of warning to anyone who > has EN - the red bumbs should NEVER be cut, pierced, or otherwise > traumatized in any way (unless its a biopsy under supervision of a > very experienced dermatologist). > > Peace and good health to all! Enjoy the beautiful weekend. > -Margarita > (idiopathic EN since 1991, idiopathic PG 2002) > > PS > After reading the post about amalgam fillings (mercury in the > silver) I am seriously considering getting my silver fillings > replaced with white ones. (Just to be on the safe side... and the > white ones will look better as well > Quote Link to comment Share on other sites More sharing options...
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