ajw4790 Posted March 28, 2009 Report Share Posted March 28, 2009 Hi!I have recently been diagnosed with having livedo reticularis (along with everything else! ). I was curious if anyone else had been diagnosed with it???I did a search of the forum on it and did not find much mention of it. It has to do with vasodilation and vasoconstriction, so I figured that a few people with EDS etc. may have it??? Also, for those who have it- does it come and go or is it present year round, cold or not?Thanks! Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 28, 2009 Report Share Posted March 28, 2009 We've talked about it here before- surprised it didn't show up on your search. I have gotten it before on my belly when I'm really, really, really sick- can't eat, etc. It goes away for me when I'm better. It's not associated with cold for me. Julie Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted March 28, 2009 Author Report Share Posted March 28, 2009 Julie,Hi, I did find in mentioned in a couple of threads, but it was mainly the same couple of people that posted. Also, everyones post I read still have it at the stage that it comes and goes. Mine is there constantly in some form. It does wax and wane though...One of neuros picked up on it. He was always staring at my arms, and I would ask him what he was looking at, but he never actually talked to me about it. I had to get the info. from his dictated note in my medical records I just picked up.I have never noticed it on my stomach, but that doesn't mean anything... Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted March 28, 2009 Report Share Posted March 28, 2009 Hi all,I have this on various places on my body, mostly legs and abdomen. The doctors always comment on it and ask if I have had a rheumatological work-up. For me, it doesn't do anything bothersome and isn't really associated with anything that I have noticed. I usually have it on some part of my body all the time. As far as I know, it is just the result of sub-optimal vasodilation/vasoconstriction balance of the skin vasculature.~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
janiedelite Posted March 29, 2009 Report Share Posted March 29, 2009 The Mayo doc said that I have it. It's most noticeable on my palms, but if I lift my feet up you can see it on the soles too. If I'm doing really poorly then my torso gets blotchy too. Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted March 29, 2009 Author Report Share Posted March 29, 2009 Hi again!Thanks for your replies! I am glad I am not alone! (although it stinks that others have it as well!) Mine was noticed on my arms. I think it is all over the majority of my arms, my legs (worst on thighs and behind knees), maybe feet? not sure with pooling etc., and I do think now that I paid more attention I have it on my abdomen as well. Most of it is hardly noticible, but it is there constantly. But, what is on my thighs and knees is the worst and very obvious.I am still trying to figure out if this has much significance for myself??? Who knows. Quote Link to comment Share on other sites More sharing options...
mae Posted April 14, 2009 Report Share Posted April 14, 2009 Hi,No offical DX of it but was told it was raynaulds but its doesn't happen when I'm cold its mostly all the time and from the pictures I've looked up it looks like Livedo reticularis I think its the blood pooling that makes more sense . Do you have it when you first wake up still laying in bed warm? Thats the only time I look normal... and I have it on my arms, legs stomach. Not on face or chest or back , I'm tired of looking at this blotchy looking skin I use to tan but can't stand the heat anymore so maybe a bottle tanner whould make it look better? Just cautious of chemicals now.Mae Quote Link to comment Share on other sites More sharing options...
pearsjon Posted April 14, 2009 Report Share Posted April 14, 2009 i was dx w/it about 2-3 yrs ago by my allergist, who btw was the one who sent me dys doc and got that dx. the allergist looked right at me and said i know what you have, let me see if i can get you in w/ this certain doc. mind you, i had no idea who or what this doc was. but the allergist told me it was livedo reticularis, and mine stays. it does not go away. it is worse w/ heat or cold. more so the cold. i also have tegangelasties (SP). both are permenate. sorry i can't spell today,oh well, maybe i can tommorrow. but, i don't know what implications other than what you mentioned. i will assume that that was the reason he sent me to dys doc. never mind, i know that LR is what made him send me to dys doc.i thank god for that very competent allergist to this day. and i send any one searching for a good allergist to him. he was awesome. 13 yrs of searching and he found it w/in 5 minutes. and imagine this, it was only by looking at me. he never touched or performed any tests on me that day. a doc that can tell by looking, i thought i had died and gone to heaven. i didn't even know they existed.and not only that, but he didn't even try to squeeze any more money out of me by running any test, even though he could have. and he never sent me a bill.may god bless him.p.s. you will find out more about it under a derma site. on whole body, but less visual on trunk. and now my teganleasties (sp) are starting to connect. i have a literal connect the dots. oh, my grandchildren are going to love playing connect the dots on nonna. what fun we willl have. Quote Link to comment Share on other sites More sharing options...
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