Not gonna lie -- forgot about this site for awhile. Glad I found it again! Anyway...
Has anybody else been affected by necrobiosis? 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
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. So I've got 3, half-dollar size lesions that are so red on my
legs -- they were tiny, thought it was a pimple when they first appeared. They've been the same size for probably a year now, sometimes they are more irritated looking (red/scaly gross dry skin looking) but they dont hurt ever. 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've got it (had it). it left some pretty significant scarring on my legs, but after 17 years they're (finally) gone.
i have no input for you though (sorry). it took about 6-7 years (i think... i can't really remember now) for them to properly diagnose it. there is another thread on here somewhere about NLD, if you want to do a search for it, i'm sure it will turn up.
you may find some of the previous responses more helpful :o)
Yes, mine first developed when I was about 10. Started with a small spot on my shin that was red and shiny and shaped like Italy. Necrobiosis lipoidica diabeticorum affects both diabetics and non-diabetics, but about half the people who have it are diabetic.
I'd never heard that it could go away or that it's related to diabetes control. Frankly, for the last 10 years I've been in the best control of my life and the spot has gotten larger. When I was a teen I had cortisone injections around the perimeter but it didn't diminish it and was SO painful. I have heard some people say online they have had improvement with cortisone and UV light treatments.
As far as I know it's just cosmetic and there's no health risk related. It's not something I would wish for, but mine hasn't been a big deal. Throughout my life most people have thought it was a motorcycle burn or a bad scrape. When people have asked about it, I've found my spot to be a good way to tell someone I'm diabetic and answer questions they have.
Hi there - My symptoms started the same way, when I was about 20 - I am 48 now. As two small pins, that spread. My endocrinologist diagnosed it soon after (1982). It is on my lower right calf and stabilized at about 2" in diameter.
(These are my experiences, and not the gospel, to follow) It is found primarily in women with diabetes and A1c is not necessarily related. There seems to be a lack of interest overall in this condition, it's treatment, let alone a cure.
Over the years it has grown, then scarred. I highly recommend that you protect this area if you are hiking, etc - if the thin skin around the area is broken, it is very difficult to heal (in my experience).
I was very self conscious about it when I was younger. Now I am
I was diagnosed with necrobiosis lipoidica diabeticorum as well, last August. I never even asked a dermatologist. I asked my endo and he knew IMMEDIATELY what it was just by looking at it. He gave me some steroid cream for it. It seems better in the winter, but the sun makes it worse.
I feel like I'm going to loose the skin on my legs completely and I am so fed up with dermatologists. I've had it for ten years and it is now spreading. I hate it. Does anything help it? Hot cold? Elevation. :(
Update - mine is gone! I believe it had a lot to do with lowering my A1c. When I was diagnosed I had a lapse in control and my A1c was up to 8.8%. Now I've been under 6% for over a year, and my legs are totally clear.
Wow didn’t get to finish that. I’m exited that someone’s NLD went away it gives me hope. Although I had mine really really bad even before I had diabetis. When my a1c was completely normal. Going on 13 years with it I’m from Alberta and found this stuff called dermablend from a dermatologist shop. It works pretty good for covering it up!