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necrobiosis lipoidica
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peace_love_socialwork posted:
Hey...Has anybody else been affected by this? Or even HEARD of it? Type I for 11 years; about 2 years ago I started noticing initially two, then a third lesion growing larger on my skin. 2 on my lower, outer calf and right below and one my shin, all of my left leg.
After about 3 months of trying to ignore them, I went to MedExpress, which led me to a dermatology clinic and then referred to a dermatologist I had never seen. Was in a different state than home away in college. So he takes a biopsy, sends it away, and it comes back "inconclusive". he then injects the two on my calf with steriods and says its "erythema nodusum". So I never went back to him and went home and saw my own dermatologist. She took another biopsy, but just seemed to keep the same diagnosis the other guy gave me without thinking about it, and then had me take a million tests (chest xrays, blood work, etc etc) and then said it was probably because of my birth control I was on (at the time, yaz). So then I go to my gyno and he basically laughs and says there is no way, but has no opinion on the marks, and gives me a new birth control.
FINALLY, over 1 year and a half of thinking it was this and that, I went to a new endo and she knew instantly it was necrobiosis. But, she basically said there was nothing to do and get your ha1c down and they'll go away. my last a1c was 7.8, not fabulous but really not that bad.
Started tiny, when the first one appeared I thought it was a zit. They have stayed a half-dollar size for probably almost a year now.. Sometimes they get kinda itchy, like almost dry skin, but they don't hurt and generally do not bother me except they are hideous and everytime i wear shorts someone asks about them. Last time i was at the endo...like 3 wks ago my nurse practioner said she would look into stuff for me but ... I guess I have to wait for my next appt in 3 months. I'm annoyed. Any input?
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phototaker responded:
I went to a few articles and read up on this. Here's one of the articles you can look at. It seems a very low percentage of people who are diabetic get this. It didn't mention anything about birth control pills.

Remember that when they give you steroids or cortisone medicine, it will raise your blood sugar levels.

This article mentioned that a higher blood sugar doesn't cause it, I believe. I need to read the article again.

I definitely believe you need to get your A1C down to under 6, anyhow, for many OTHER reasons. It's too high. I also have a rash like blister on my hand that was from diabetes, but not what you have. One went away, and now I have another one.
I could use cortisone cream, but they just come back anyhow I was told. I saw two dermatologists and read up on it, too.

Here's the article I read. Just go online and read through different articles, so you can have some questions set up for your next appt.

http://dermatology.cdlib.org/103/NYU/case_presentations/042004n10.html
 
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phototaker responded:
Is this what it looks like?

http://www.webmd.com/skin-problems-and-treatments/picture-of-necrobiosis-lipoidica-diabeticorum

Just go online and type in the words of what they said you had and you'll find different articles.
 
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peace_love_socialwork replied to phototaker's response:
Here..give me a couple minutes and I'll put a picture up. Gotta move to some better light for a minute
 
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peace_love_socialwork replied to phototaker's response:
no thats not what it looks like at all. I think I've found a least one picture of EVERY skin disease with lesions that looks a little like it.

Yeah...the birth control thing was just a bunch of b.s.
 
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peace_love_socialwork replied to peace_love_socialwork's response:
https://picasaweb.google.com/lh/sredir?uname=100766976023493708877&target=ALBUM&id=5599713777744190113&authkey=Gv1sRgCMuazJzjrL6B_AE&feat=email

That was a pain in the ass. That link should work. The two on my calf/ankle was an awkward picture to take -- the close up one is the one on my shin.
 
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peace_love_socialwork replied to peace_love_socialwork's response:
https://picasaweb.google.com/100766976023493708877/Apr252011?authkey=Gv1sRgCMuazJzjrL6B_AE&feat=directlink

Wait, that should work. Sorry! I'm excited at least somebodys responding I've never used any of .. what I'm doing before. haha.
 
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phototaker replied to peace_love_socialwork's response:
I'm not a doctor, just another diabetic. Read up on things and do what your last dermatologist told you to do. Good luck!

The other thing you need to do is get down your A1C! That's very important as you don't want to have other problems going on in your body. What kinds of foods are you eating?
 
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peace_love_socialwork replied to phototaker's response:
Oh a bunch of junk. My excuse right now is I'm a full time grad student blah blah. I've been significantly better the past month (had my last appt with that A1C like..1 month and a week ago). I go to the Joslin Center in Pittsburgh -- I'm excited because next week I'll be wearing a continuous glucose monitoring thing for a couple days then going back so we can see whats going on. I'm on a pump, but my sensitivity levels have seemed to increase over the years --- so my main problem with high levels is that I underdose so I dont have to deal with a low while I'm at school, commuting an 1 every day, you know. Have had diabetes for 11, on a pump for 10. Finally found a good set of doctors too, had a sucky one for 2 years that I just dealt with.
 
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phototaker replied to peace_love_socialwork's response:
Hi Peace...Love...social work....I know you've had diabetes for a long time for a young person. It's time to get stricter again, as your numbers are not looking good at all, and you don't want to have other major problems happening, not just skin conditions.
Granted, it's a little harder being younger, around other students eating pizza, and other things that a diabetic has to not eat.

No one can make you eat healthier. You just have to wrap your head around it, and want to feel better.

When you're ready to do that, please ask any questions you want. Make sure you read what others are posting. How do you feel about having diabetes? Have you decided to work as hard as you can, to get even better numbers?

Diabetes isn't fair, but then again, life is not fair sometimes, either. Is it safe to safe you have diabetes I? What helps me is to know there are so many other people out there who have major health issues, harder than what we have to deal with....I feel people with diabetes I have to go through a lot more to keep on track, but I know some really wonderful people on here who work darn hard to keep their numbers down, because they want to be able to see and walk. Diabetes can rob you of many things if you don't take care of it.

Are you not eating correctly or exercising while on the pump or is it just occasionally you eat more carbs at a time?

It doesn't matter what any of us say, as you have to make the choice to do what's good for your body, as you reap the whatever choices you make.

Good luck!
 
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phototaker replied to phototaker's response:
By the way, on the A1C, the last month takes up a good part of your A1C. You may have been having much higher numbers in the first two months. I'm glad to see you're starting to eat a little healthier.
 
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carmelbaby65 responded:
Guess we're in the same boat. Only mine aren't lesions. Mine started out years ago as kind of light brown spots about the sz of half dollars on my left leg. Then they got darker and stayed like that for about a year. Then they kept getting worse and worse. Then started to hurt constantly. Feels like somebody's stabbing my leg with an ice pick. The pain was daily. At the time I worked in a factory, standing on a concrete floor for 12 hrs a day. Like you, I'd had every test possible, and still nothing. Finally an A1C was done and found out I was diabetic, but barely. I was told that if I lost some weight I probably wouldn't even be diabetic. But he still had no idea what was wrong with my legs. I got online and found an endocrinologist and started seeing him. He was the one who told me it was necrobiosis lipoidica diabetacorum. He started me out taking different meds,which of course didn't help. Then he told me about the steroid shots that might help. But I was already out on medical leave, because I had knee surgery. I had extended my leave because of my leg condition. During this time, my insurance from work ran out. And I could no longer continue seeing the endo doc. So I'm stuck between a rock and a hard place because I have them on both legs. I have no idea what to do because they are just getting worse. I'm currently unemployed and can't afford to find another endo doc.
So If you happen up a treatment that actually works I would really appreciate the info. If you don't mind please email me at carmel361310 at yahooo dot com. Good luck
 
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An_251051 replied to carmelbaby65's response:
I am sorry for all your troubles you are having - you are posting to discussion that took place 2 yrs ago and the person has not posted since. They tried going to a free clinic in you area for help?


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