Guest guest Posted December 14, 2006 Report Share Posted December 14, 2006 I'm sorry. I just got back on and read this. The PG has gone away as far as the sores go. I've still got some really bad scaring from it. It sounds to me like most doctors don't really know that much about it. Is that correct? Please read my post from today (To say I'm frustrated...). I would like to know if there is a specific type of doctor I can request to see to at least find out the connection for all of this. Thanks again! -Kristy > > > > Hi all! I am glad I found this group. I feel I can learn alot! > > > > When I was in my early 20's, I started to get these " bruises " on > my > > legs. But, they weren't really bruises. They didn't hurt like > > bruises, and they itched like crazy. I went to my doctor several > > times, but I really kind of blew it off. When I was in my early > > 30's, my doctor finally referred me to a dermatologist. Because I > > am significantly overweight, she jumped right to a pre-diabetic > > condition and would not even test me for anything else. After the > > umpteenth glucose tolerance test, I was deemed to NOT be > diabetic! > > (My blood sugar is actually lower than normal.) I lost a bunch of > > weight 5 years ago, and the spots faded. At that point, an > > associate of my doctor said that fat cells produce estrogen, and I > > was getting an overabundance of estrogen. Naturally, since I was > > losing weight, the spots were fading because my fat cells were not > > producing as much estrogen. I've sinced gained all the weight > back > > (yuk!) and the spots are back (only not as severe). > > > > About 3 years ago, I developed these spots on my stomach. They > were > > along my beltline. I live in the country (in Texas), so my > > assumption was that I had been bitten by a brown recluse (the > tissue > > appeared necrotic). I went to the doctor and saw a different > doctor > > because it was on the weekend. He diagnosed a staff infection and > > prescribed anti-biotics. When the areas got worse (it was like > > having my flesh eaten away), they sent me to a dermatologist. He > > took one look at it, walked out, grabbed his associate, grabbed a > > medical textbook and diagnosed PG. He had been in practice for 30 > > years, was the head of this practice and he had only seen it one > > other time in his life!! That was scary to say the least. > > > > In the middle of all of this (probably 5 or 6 years ago), I > > developed a condition called uveitis in my right eye. I went to > the > > eye doctor, and he had my doctor run every test imaginable to see > > what autoimmune disorder I had. All tests were negative. A > couple > > of years went by with no flairs. For the past 3 or so years, I > have > > had flairs off and on about every few months. It is now in both > > eyes. So I went from doctor to doctor. Finally, I was referred > to > > a retinal specialist. He wanted to do a chest x-ray on me to see > if > > there are sarcoids present. While doing research on sarcoids, I > > came across this group. > > > > And here I am!! Got the chest x-ray today. I'm hoping that they > > can finally put this all together and figure out what the heck is > > going on!! > > > > Thanks for being here. I look forward to reading your posts! > > > > Kristy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2006 Report Share Posted December 15, 2006 well kristy.... here are my observations, not knowing a lot about you. you have ruled at least one thing out. you have 2 of the 3 known enteropathic effects of ibd and some other autoimmunities. i have all 3 btw. but, that does not mean it has to be ibd either. no gut problems? about 1/2 the time the pg occures due to a few autoimmunity diseases (rebecca has posted a few links lately listing these). a few of these are cd, uc, ra. there are about, what rebecca, 5 more? something like that. some i have never heard of. so you have about a 50/50 chance these issues are associated with one of these. in that you have the eye problem (so do i, only it is episcleritis) and pg, i would be HIGHLY suspecious of one of these associated diseases. i guess the best doc is the one that is associated with the most likely of these, to rule them in or out that is. my cd and pg was dx'ed together pretty much. they both flared badly together. but i had had issues with both of these off and on for a few years. the first time i had pg it was small and went away. so i goes, " well, okay, that was interesting " . the gut issues and pg issues early on were so mild and suttle i tended to chalk it up to other things. " autoimmunity " was a passing word that i might have heard 2 times in my whole life, but i would had been hard pressed to tell you anything about it at that time. now it seems i know everything about it (well, no, not really, just seems...lol). don't know if this helps, but this is THE commonality i see here. i can tell you with .95 probability that the eye and derm issues are associated and you have at least, likely more than, .50 probability is is linked with another underlying cause. i would continue investigations and start picking on the most likely of them. jeff, imed, class of 1999 cd, class of 2001 pg, class of 2002 > > > > hi kristy, > > > > welcome! i sounds like the pg has since gone away??? but anyway, > > if i can be any assistance, let me know. > > > > i have pics of my agressive pg from 2002 in the photos section, it > > will give you an idea of what i was up against. the rest of the > > info i have written about is in the pg forum as rebecca mentioned. > > > > jeff Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2006 Report Share Posted December 18, 2006 Yeah -- no bowel issues. I've been tested for what seems to be everything. Very frustrating. I'll take your e-mail with me to the doc next week though. Thanks! -Kristy > > > > > > hi kristy, > > > > > > welcome! i sounds like the pg has since gone away??? but > anyway, > > > if i can be any assistance, let me know. > > > > > > i have pics of my agressive pg from 2002 in the photos section, > it > > > will give you an idea of what i was up against. the rest of the > > > info i have written about is in the pg forum as rebecca > mentioned. > > > > > > jeff > Quote Link to comment Share on other sites More sharing options...
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