Guest guest Posted May 17, 2007 Report Share Posted May 17, 2007 Hi Elaine,Thanks for posting those new photos. May 07 New Calf Wound By: pali310 Album: Elaine aka pali319 May 07 New Calf Wound II By: pali310 Album: Elaine aka pali319 Arthritis Walk By: pali310 Album: Elaine aka pali319 Did the PG reoccur after the Arthritis Walk? You look so happy at the walk! I absolutely hate that PG is keeping so many of our members in pain and from enjoying an active life. I promise you that once we get the EN Research grant funded, PG is next!Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2007 Report Share Posted May 17, 2007 Hi , Thanks for posting the photos and for your response. Yes, the PG did flare after the walk. It was the first time that I had worn 'real' shoes, well Converses, in all of these months. I was feeling great and walked two miles, but I may have overdone myself. The walk could have caused the new flare; however, I am in physical therapy now to build my leg muscles back up, so we shall see if it causes further problems. So far, the exercise has been a help with my balance and circulation. I also am getting therapy on the hand in which the pinkie finger was partially amputated, which is also going well. Hey, I even hit a softball last weekend. It was not too far, but I did it. The doctor said to keep that sort of routine activity up, but not to go overboard. Overall, though, most of the wounds are finally healing, so I feel blessed on that level. I am scheduled to return to work in two weeks, so that is a real indication of progress. I just have to take all of this one day and one incident at a time. I cannot wait until the day that we do get funding to research and tackle this awful disease. Thanks, again, for this board and all that you do. Love, Elaine > > Hi Elaine, > Thanks for posting those new photos. > [0] <../../../spnew/view/f4b3?i=131> > > May 07 New Calf Wound <../../../spnew/view/f4b3?i=131> By: pali310 > <http://profiles.yahoo.com/pali310> Album: Elaine aka pali319 > <http://health.ph.groups.yahoo.com/group/erythema_nodosum_Group/photos /b\ > rowse/f4b3> [0] <../../../spnew/view/f4b3?i=132> > > May 07 New Calf Wound II <../../../spnew/view/f4b3?i=132> By: pali310 > <http://profiles.yahoo.com/pali310> Album: Elaine aka pali319 > <http://health.ph.groups.yahoo.com/group/erythema_nodosum_Group/photos /b\ > rowse/f4b3> [0] <../../../spnew/view/f4b3?i=133> > > Arthritis Walk <../../../spnew/view/f4b3?i=133> By: pali310 > <http://profiles.yahoo.com/pali310> Album: Elaine aka pali319 > <http://health.ph.groups.yahoo.com/group/erythema_nodosum_Group/photos /b\ > rowse/f4b3> > > > Did the PG reoccur after the Arthritis Walk? You look so happy at the > walk! I absolutely hate that PG is keeping so many of our members in > pain and from enjoying an active life. I promise you that once we get > the EN Research grant funded, PG is next! > Love, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2007 Report Share Posted August 23, 2007 OMG!!!! i have to admit, i never saw pg that bad, only in rare cases on the web........maybe. what incredible pain that is. God my heart goes out. how can any doc in his right mind let that go on, i will never know! i can't wait until you get the treatment you need. if i didn't know you were headed to a good doc, i would have absolutely and STRONGLY suggested the cleveland clinic leg wound care center. in all honesty, there are only about 2 or 3 places that treat pg in that condition. getting that bad i am almost afraid there might be now other complications down the road. personally? i would have gone to cleveland and camped on their door until they took me in. hmmmm, i wonder if they have an er. i think it is that serious! i don't think you should wait another minute!!!! please consider leaving immediately! jeff > > Hi Elaine, > Thanks for sending your current PG photos. > > [0] > <http://health.ph.groups.yahoo.com/group/erythema_nodosum_Group/photos /v\ > iew/f4b3?b=9> > Right leg 8-17-07 > <http://health.ph.groups.yahoo.com/group/erythema_nodosum_Group/photos /v\ > iew/f4b3?b=9> By: pali310 <http://profiles.yahoo.com/pali310> > [0] > <http://health.ph.groups.yahoo.com/group/erythema_nodosum_Group/photos /v\ > iew/f4b3?b=10> > Right ankle and calf 8-17-07 > <http://health.ph.groups.yahoo.com/group/erythema_nodosum_Group/photos /v\ > iew/f4b3?b=10> By: pali310 <http://profiles.yahoo.com/pali310> > [0] > <http://health.ph.groups.yahoo.com/group/erythema_nodosum_Group/photos /v\ > iew/f4b3?b=11> > Right leg 8-17-07 > <http://health.ph.groups.yahoo.com/group/erythema_nodosum_Group/photos /v\ > iew/f4b3?b=11> By: pali310 <http://profiles.yahoo.com/pali310> > I know Dr. Chia is going to look at this as a challenge and use his vast > experience to get it under control. Have you started to use the > hydrofera blue bandages yet? > When I see your photos I remind myself of how many of our PG members > are suffering and I rededicate myself to doing whatever I can to help. > Elaine, If my prayers are answered your legs will heal and the pain will > stop soon. > Love, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2007 Report Share Posted August 25, 2007 Hi Jeff, OMG is right. Thanks for your response. Fortunately, I was able to get into Stanford again last Wednesday, and a new team of doctors evaluated me. They were surprised as to what the wounds have become and very troubled by the lack of response from my current doctors. I did turn my case over to them, and they are going to try a different regimine of medications, one of which is Dapsone. In a couple of weeks we are also going to try a differnt infusion (glomabide or something like that). They also are going to get aggressive with the wound care process. An 'unaboot' is going to be fitted this week along with various topical ointments and hydro treatments. They are very concerned about the swelling, so the boot should mitigate some of that. By the way, have you heard anything about this boot? Oh, they are also going to prescribe different dressing to try and do a gentle debriding and lessen the smell factor, which I cannot stand. I actually put a sheet of fabric softener in my dressing, but they asked me to stop that. As you know, I am going to the Mayo Clinic on September 4th, so I will have Stanford and Mayo helping me out. The cool thing is that the primary case doctor at Stanford has been e-mailing me back and forth, so I feel comfort with that fact. He is young, has dealt with PG, is aggressive, and is confident that we can get this under control. He, too, is concerned with the ill affects that having this for so long may have created. In fact, the fluid in my lung finally has gone away, but they found a mass. I go in for a PET Scan on Wednesday, so wish me luck, but the doctor thinks that it may be a result of all of the meds that have been tried. I am so angry at my now former doctors that I am beside myself, yet I have to keep the attitude in check as best I can. This has just been one horrible nightmare, to say the very least. Thanks, again, for all of the advice and support. I hope that you are doing well and enjoying your weekend. Love, Elaine > > > > Hi Elaine, > > Thanks for sending your current PG photos. > > > > [0] > > > <http://health.ph.groups.yahoo.com/group/erythema_nodosum_Group/photos > /v\ > > iew/f4b3?b=9> > > Right leg 8-17-07 > > > <http://health.ph.groups.yahoo.com/group/erythema_nodosum_Group/photos > /v\ > > iew/f4b3?b=9> By: pali310 > <http://profiles.yahoo.com/pali310> > > [0] > > > <http://health.ph.groups.yahoo.com/group/erythema_nodosum_Group/photos > /v\ > > iew/f4b3?b=10> > > Right ankle and calf 8-17-07 > > > <http://health.ph.groups.yahoo.com/group/erythema_nodosum_Group/photos > /v\ > > iew/f4b3?b=10> By: pali310 <http://profiles.yahoo.com/pali310> > > [0] > > > <http://health.ph.groups.yahoo.com/group/erythema_nodosum_Group/photos > /v\ > > iew/f4b3?b=11> > > Right leg 8-17-07 > > > <http://health.ph.groups.yahoo.com/group/erythema_nodosum_Group/photos > /v\ > > iew/f4b3?b=11> By: pali310 <http://profiles.yahoo.com/pali310> > > I know Dr. Chia is going to look at this as a challenge and use his > vast > > experience to get it under control. Have you started to use the > > hydrofera blue bandages yet? > > When I see your photos I remind myself of how many of our PG > members > > are suffering and I rededicate myself to doing whatever I can to > help. > > Elaine, If my prayers are answered your legs will heal and the pain > will > > stop soon. > > Love, > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2007 Report Share Posted August 25, 2007 Hi Elaine, I'm so happy to know that you have confident and experienced doctors on your team now ready to try new approaches. Our member Shane Mayberry used an unaboot for his PG. Here is what he wrote a while back: NOT SURE IF THE SPELLING IS CORRECT...UNNA-BOOT. THEY ARE USED IN THE TREATMENT OF OPEN WOUNDS AND ULCERATIONS. ANYONE OUT THERE WITH OPEN ULCERS AND IS NOT USING THESE IN THE TREATMENT OF THEM ...NEEDS TO KNOW ABOUT THEM!!! THEY WERE THE SINGLE MOST IMPORTANT TREATMENT IN EASING PAIN AND SWELLING WITH MY P.G. I DON'T THINK I COULD HAVE HANDLED THE PAIN WITHOUT THEM!! JUST A COUPLE OF HOURS OUT OF THEM REDNESS , SWELLING , AND OVERALL PAIN INCREASED CONSIDERABLY!!! DEFINATELY SPEEDS UP HEALING ALSO (IF YOUR BODY IS READY TO HEAL) http://www.vitalitymedical.com/wound-care/compression-dressings/ ******** So at least one PG success using the unaboot :-) Just days from now you'll be at Mayo! I'm wishing you all the very best success in getting the PG under control and getting back to feeling good. No one deserves to suffer like you have. Love, idio. EN '68 > > All, > I apologize for the reign of horror caused by posting my latest PG > photos. I did not mean to cause that reaction; instead, I wanted to > share my saga with those of whom understand and have been following my > journey. > I do want to say that mine is a very rare case of PG and one of which > we are having difficulty getting under control. Part of the problem > has been finding the right doctors, so I want to underscore Jeff's > constant advice of seeking out a good and credible learning institution > for appropriate help. > For those with PG, thanks for the advice, support, and prayers. I > certainly do appreciate it. For those with EN, thanks for allowing us > to participate in this forum, and I truly hope that your disease never > mophs into PG. I also hope that nobody has to go what I have had to > endure. > Regards, > Elaine > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2007 Report Share Posted August 26, 2007 okay elaine, i feel slightly better now.......just a little. i can only related relative to my past experience. things i was on, according to northwestern university expert, fk506.....tactrolimus. it is used primarily for transplant patients, is related to the cyclosplorine family. that was the ONLY thing that got my agressive pg under control. dapsone? well, i hear good and bad, my opinion is that it is " playing around " again. don't think it is strong enough to cut it. your case is so many times more widespread than mine, same agression, but so much more wide spread. i can tell it has gone on and on and on. uniboot. think that is made of zinc. i had one that was wrapped. didn't do squat. i think they are being too conservative imho. the ONLY way i was able to get mine under control was get admitted to the hospital so they could run the necessary tests and " watch guard " because these meds, like tactrolimus are dangerous. there is NOT going to be an easy way out of this. this is some serious chit!!! don't mean to scare you but even your stanford docs need to notch it up about 3 fold on the aggression scale. let me be blunt. i went to university of michigan medical center, out patient for several months. this primadonna petty treatment krap just didn't cut it. i ended up in so much pain, i went there......with my bag packed, with my wife insisting as well, and said YOU WILL ADMIT ME AND HELP ME OR I AM GOING TO MARCH RIGHT DOWN STAIRS AND ADMIT MYSELF INTO YOUR ER!!!!. the derm dept did not have admission rights, however, my gi doc did. they paged her, AT MY INSISTANCE, dr zimmerman, and she said, " ADMIT HIM!!!!!...under my name and dept " ...which was gi. you see, my wife and i don't put up with any bull shit. sorry, this just cranks me. they need to get aggressive NOW, this minute! dang. okay, i will shut up. God, i feel so bad about this. i just can't verbalize enough that there IS light at the end of the tunnel, but these frick'in docs just bs around...damn!! if you have to, call me. send me a private e-mail and i will give you my home phone number. i feel awfully strong about this. love, jeff > > > > > > Hi Elaine, > > > Thanks for sending your current PG photos. > > > > > > [0] > > > > > > <http://health.ph.groups.yahoo.com/group/erythema_nodosum_Group/photos > > /v\ > > > iew/f4b3?b=9> > > > Right leg 8-17-07 > > > > > > <http://health.ph.groups.yahoo.com/group/erythema_nodosum_Group/photos > > /v\ > > > iew/f4b3?b=9> By: pali310 > > <http://profiles.yahoo.com/pali310> > > > [0] > > > > > > <http://health.ph.groups.yahoo.com/group/erythema_nodosum_Group/photos > > /v\ > > > iew/f4b3?b=10> > > > Right ankle and calf 8-17-07 > > > > > > <http://health.ph.groups.yahoo.com/group/erythema_nodosum_Group/photos > > /v\ > > > iew/f4b3?b=10> By: pali310 <http://profiles.yahoo.com/pali310> > > > [0] > > > > > > <http://health.ph.groups.yahoo.com/group/erythema_nodosum_Group/photos > > /v\ > > > iew/f4b3?b=11> > > > Right leg 8-17-07 > > > > > > <http://health.ph.groups.yahoo.com/group/erythema_nodosum_Group/photos > > /v\ > > > iew/f4b3?b=11> By: pali310 <http://profiles.yahoo.com/pali310> > > > I know Dr. Chia is going to look at this as a challenge and use > his > > vast > > > experience to get it under control. Have you started to use the > > > hydrofera blue bandages yet? > > > When I see your photos I remind myself of how many of our PG > > members > > > are suffering and I rededicate myself to doing whatever I can to > > help. > > > Elaine, If my prayers are answered your legs will heal and the > pain > > will > > > stop soon. > > > Love, > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2007 Report Share Posted August 26, 2007 NOOOOOOOOOOOOOOOOO! do NOT apologize!!!!!!!!!!!! you did the right thing!!!!!!!! i am here to help and i won't stop until you get better. i can't believe you are even writing this, the pain has got to be something incredible!!!!!!!!!! jeff > > All, > I apologize for the reign of horror caused by posting my latest PG > photos. I did not mean to cause that reaction; instead, I wanted to > share my saga with those of whom understand and have been following my > journey. > I do want to say that mine is a very rare case of PG and one of which > we are having difficulty getting under control. Part of the problem > has been finding the right doctors, so I want to underscore Jeff's > constant advice of seeking out a good and credible learning institution > for appropriate help. > For those with PG, thanks for the advice, support, and prayers. I > certainly do appreciate it. For those with EN, thanks for allowing us > to participate in this forum, and I truly hope that your disease never > mophs into PG. I also hope that nobody has to go what I have had to > endure. > Regards, > Elaine > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2007 Report Share Posted August 27, 2007 : Thanks so much for cheering me on and for the information on the Unna- boot. I have heard so often that compression helps, but nobody did anything about it, so I hope that I am now on the right path. It sounds like Shane experienced great relief from this application, so I am praying to have the same results, and I am hoping that it is soon. I feel as if I have hit the proverbial wall here, so I will put my faith in anything that will move this forward. Between Stanford and Mayo, something has to work. Thanks, again, for sharing this information. I also thank you and the entire group for allowing me to share my experience and for all of the great responses. I shed a lot of tears lately, but I smile when I feel such connection to my cyber-friends on this board who understand how this feels and how very difficult it is to get through each day with such terrible distraction. Love, Elaine > > > > All, > > I apologize for the reign of horror caused by posting my latest PG > > photos. I did not mean to cause that reaction; instead, I wanted to > > share my saga with those of whom understand and have been following my > > journey. > > I do want to say that mine is a very rare case of PG and one of which > > we are having difficulty getting under control. Part of the problem > > has been finding the right doctors, so I want to underscore Jeff's > > constant advice of seeking out a good and credible learning institution > > for appropriate help. > > For those with PG, thanks for the advice, support, and prayers. I > > certainly do appreciate it. For those with EN, thanks for allowing us > > to participate in this forum, and I truly hope that your disease never > > mophs into PG. I also hope that nobody has to go what I have had to > > endure. > > Regards, > > Elaine > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2007 Report Share Posted August 28, 2007 Elaine, Wishing you much luck with your Dr. appts. Keeping you in my thoughts. Debbie EN 5-7Get a sneak peek of the all-new AOL.com. Quote Link to comment Share on other sites More sharing options...
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