Thanks for sharing Meghan, isn’t it amazing when some MD’s are clueless. It also amazes me that there is not some sort of treatment. My sister says you had that checked out years ago, go back to the dermatologist I am sure there is something they can do for you now, well, sorry sister there is not. 
I think even one dermatologist was not familiar with it, when I sought treatment. 
My grandmother also had that. She went to a doc who gave her some creme for it and said he wasnt sure what it was. I now know what it is thanks to you. Like I said in my email, I am learning from my new friends things and appreciate all of you. Thank you for the insight
Wonder if this skin issue will be mention on Dlife this week.
http://www.dlife.com/dLife/do/ShowContent/dlife_media/tv/As_Seen_Show_183.html
It is complications such as this, and all the others possible, that have me frightened the most. I don’t know what damage has been done to my body and to what extent, and won’t know until ten years or more down the road. I see exactly where you are coming from and i feel your frustration. I’m worried about dropping dead of a heartattack becausee my heart beat is irregular at times, frequently.
I love the beach too, I would go anyway if i were you!
I do go and have for years, leg thingy has been since my teens and I am 50 now. Just wonder how different I would of been without all this baggage I carry around with me from this disease.
Today I was at Macy’s and could not remember my SSN as I was having a low, did not tell the women that, but now is it a low or a senior moment, omg.
Karen
In the last few months I’ve had some isolated sores on my legs. It’s been driving me nuts because I didn’t remember hitting my legs and I couldn’t figure out what was causing them. I’ll take a picture and post it later.
It sounds like early stages of NLD. Thank you for posting about this, it’s good (in a strange kind of way) to know what’s causing it. Now I’ve got to figure out if I can reduce the incidences. Ah diabetes, like guilt, is the gift that keeps on giving. 
I’m so sorry you have to deal with this, but I am glad you came here to vent. You have gotten some really great responses and you have raised awareness. Thank you for sharing.
A friend of mine from diabetes camp had (has?) this for many years. You are not alone with this! I know it was hard for her to deal with too. The severity of it seemed to change based on her BG control, but as far as I know, it was always present even when her BG was well controlled. I haven’t asked her about it in years, so I don’t know if she still has it (I suspect she does).
Thanks everyone for your continued comments. It is not painful unless you hit it and the skin is very very thin and so ugly in my mind. The redness has lightened over the years but it never goes away and there is no cure or anything to fix it. So it is the “look” of it that has effected me so over most of my life and makes me feel very unattractive. Not looking for sympathy just stating the fact how diabetes has effected me psychologically.
hi karen,i am so sorry that you’re have a bad time,but i have never heard of nld.get to feeling better and i will check back later.
hi karen,what i hate most about diabetes is how bad you feel when blood sugar to low or high,because i no longer feel when it is coming on.if i didn’t have cgms i would be in alots of trouble,this monitor is the best thing since wheat bread///smiles//
Hi Karen,
Not only do I have it but my grandfather had it also. When I first got it, probably about 7 years ago, the skin broke out with red, itchy bumps. At first I scratched them open and they became infected and off to the doc for antibiotics. So basically I had the darkness (at its worst was dark purple) and then open sores on top of it (I tried not to scratch but I would scratch them open in my sleep). I was given a topical ointment to apply to it. And none of the medical professionals seemed to know what it was.
A little history though (and I’ll try to keep it short), for years I was misdiagnosed a type 2. I did the diet, I took the medicines and they always made me sick. I suppose if I didn’t get so frustrated (bg’s were not coming down!) and changed doctors so much maybe I would have gotten better care but that’s all water under the bridge now. I ended up seeing a doctor that is a diabetic educator in our local branch of the Mayo Clinic. She finally put me on insulin and it brought my blood sugar down right away. However a lot of damage had been done already and I had a second internal bleeding episode (a vein in my esophagus) that almost took my life.When the GI doctor saw this he immediately said the local hospital was not equipped to see me and I was transferred to the Mayo Clinic in Rochester. Geographically it was fine because we live 50 minutes from there. I saw different teams of doctors and for the first time, my “leg rash” had a name given to me by their Diabetic team.
Over time with now stable blood sugars my leg rash is now more of a muted pink color, no rash and no sores. I guess with it looking its worst I didn’t mind going out. I would occasionally see people look but I only had a few inquiries to which I found the easiest way to reply was “diabetic complications.” But think about it, I didn’t know how to answer because I didn’t know what it was called or what caused it! However, when the open sores were there, it did bother me to go out with 10 band-aids overlapping, sideways, etc on my shins. And the beach was out of the question anyway, with open sores, best not to get them wet.
Thank you for sharing. Before this, the one person that I knew could have been here to share this with, my grandfather, has been gone for quite a few years. He may have been diabetic and almost lost his leg to the one open sore that went bad (gangrene) but he fought it out and won. He lived to be 95.
And sorry for the book.
Take care and keep a stiff upper lip.
Chris
Hi Karen,
I have had NLD now for about 5 years and it’s no fun at all!!! I have tried steroid creams and those only irritated the area so I quit using them. Like everyone else, I get lots of head scratches and baffled looks…even from my dermatologist.
Right now my hubby and I are trying to get pregnant so I am off any kind of treatment until (hopefully) we can have a baby.
Mine is a nice dark brown-purpley color and is about 4-5 inches long on my left shin. I ALSO have grannulom annulare which is a similar skin disorder and causes round pinkish spots on my legs too. So, you can bet it’s a rare day that I show my legs off, but occasionally I just get too hot and wear them anyway! I live in Florida and if we ever go to the beach, i use body makeup to cover my spots but it takes forever and never quite looks the same. But, the beautiful beach and the feel of the water on my skin makes up for it
Sometimes you just have to say, it doesn’t matter and the people that love me don’t care about what my legs look like. At least my legs are still working :o)
Take care!
I had my first signs of NLD in 2009. My dermatologist gave me a sample of Clobex lotion and it cleared it up. If it reappears, I use the lotion and it helps right away. Don’t know how effective this would be for someone who has had it for so many years.
I’ve had NLD since before my diagnoses, which was incorrectly diagnosed 6 yrs. prior as eczema. So, I can totally relate Karen. It’s a bummer catching stares and fielding questions (some people have no tack at all) and feeling self conscious. That being said, it’s also helped me develop a healthy love of boots (ya1 shopping0 long skirts and dresses and black tights. so, it doesn’t really bother me so much anyone. but you’re not alone!! Obviously by the posts, we’ve got quite a group of lucky NLD subscribers.
I developed NLD about 1 year after I was diagnosed with Type 1 diabetes. I was totally devastated as a teenager and it made me feel even more like a freak. After I became tightly controlled, they started to fade with time. 33 years later and they look like faint scars. It’s totally unfair that NLD is more prevalent in women as we live in a society that glorifies the sex appeal of women in skirts and high heels.
The things you learn on this board. I am a D all my life and have never heard of this before. Thank you for your post. Very informative.
I am sorry you have to deal with it though, as if you need more to your task.
When I was younger, I think maybe 7th or 8th grade, I cut myself shaving my legs. It was a pretty bad cut…took a few layers of skin off. It was right on my shin. Any way, it never really healed right and now I have a circular spot on my shin. It used to be really red and the shape of a heart…but now it is round and it has really lightened up a bit. It more matches my skin tone now. It’s a lot better in the summer when it gets a little sun…probably not the best, but I used to be really self conscious about it, but now I am over it. It’s just a part of me. My endo told me that they could inject cortizone into it and it would disappear, but eventually it will come back! Does anyone know of any treatments or ways to make it disappear or are we stuck with this forever? Just wondering…
I was just diagnosed with this as well. My doctor told me that I should take aleve twice a day and it should go away. It is a very minor case that just started a few months ago and I am terrified!!! He seemed to think I was over reacting bc of my tears in his office. Has yours been painful or caused any other symptoms besides the strange appearance? Thanks for your response,
Jennifer
No pain and after 30 years it faded a bit, but now I have Granuloma annulare.
No cure for me.
I hope the aleve works for you, let me know.
I have tried many steroid creams and nothing has helped.