I have very similiar symptoms and I haven't been successful in figuring out the problem. They said it was Venous Deficiency but it has now started to spread to my arms as well. I have a tumor on my pituitary gland that I take Bromochryptine for. Other than that, and this skin problem, I have nothing else wrong with me. I am 38 years old and this is getting quite scary. I hope someone can help us figure out what the problem is.
Your physician has been quite thorough in pursuing the most probable differentials for your condition. However all the examinations showed negative results including the rheumatologic tests (is this correct?).
I suggest that you discuss with your physician if a skin biopsy is indicated at this time. I would think this is apt for the moment given that several tests have been done and until now, diagnosis is still inconclusive. Your history of psoriasis and thyroid problems may not be directly involved here but they may be significant.
I understand this is hard for you but stay proactive and do not give up. Keep us posted regarding your progress.
Hi Clara and Vanessa!
I have went on an appointment spree. Tomorrow I have an appointment with an allergist. Just humoring myself, I suppose. Would be nice if it were that simple, though. Friday I have an appointment with a third dermatologist (3rd times a charm, right?). I am going to ask the dermatologist about the skin biopsy. Thanks for the advice. And, if neither of these can provide any clues, I plan to make an appointment with a specialist experienced with Vasculitis. I know the internet is the worst tool as it relates to self diagnosing, but pictures of this seems to look most similar to my skin. I am discouraged, but going to try to find an answer. I'll let you guys know what I find out!
Thanks for your thoughts!
Forgot to answer your question: Yes, all tests including rheumatologic have been negative.
Hi. Joy, it sounds like I'm going through pretty much the same thing. I've been to so many doctors, had endless blood tests, a skin biopsy, and still no answers. My rash started in a different place- my right inner calf. I went to a dermatologist and he thought it was caused by long term exposure to thermal heat from a small heater I was using (erythema ab igne)- he advised that if I stopped using the heater it would go away. I did, and instead the rash continued spreading, to my thighs, arms, and most noticeably my hands, indicating that this was something else. Aside from having the reticular pattern, my hands have turned dark red/purple. The rash doesn't react to temperature at all, but disappears completely after I've been lying down for a few minutes (weird).
Since the livedo reticularis started, I've also been getting these hives every time I take a shower in warm water, or get mildly upset. And my veins have become much more prominent, sticking out where they didn't before.
I don't know what else to do. It continues to get worse, and no one can offer me any help.
I just turned 19 years old and have been really healthy all my life, except for earlier this year when I got a bad case of mono.
I am rooting for you. Please reply if you find out anything new.
Since this started, I have had the same issue with hives. When I am upset, I have broken out. This hadnt happened before. Also, mine disappears when they are elevated (when I have been laying down at night, laying out in the pool, etc).
Since my last post I have seen an allergist, who didnt feel it had anything to do with an allergic reaction. I saw a new General Practitioner, who was just as puzzled as the rest. The closest thing I could find online to my symptoms is vasculitis. I mentioned this to the GP and they did not disagree. They have encouraged me to make an appt with Cleveland Clinic, which has a vasculitis center. I plan to do that tomorrow.
In the mean time and as a result of my appoint scheduling spree, I saw a dermatologist. She diagnosed it as Generalized Essential Telangectasia. She prescibed a tetracycline type antibiotic and said "lets wait and see". So far, no major improvement. She also said we could try laser. Now, I want to find a diagnosis; but I dont know that I completely agree with this one. It seems that a lot of it has to do with circulation as it gets worse while I am sitting with my feet on the floor or standing without moving. They get dark red, sometimes greyish purple and begin to ache with pressure. I have had 2 ultrasounds of my legs and nothing was found. I am not how deep the vessels are that this affects, but I can see that much of it is at the most superficial of levels...tiny, tiny vessels on my skin. You must be very close to distinguish the actual vessels; otherwise, it looks like sunburn (many people have asked if I am sunburned).
I am sorry to hear you are experiencing this so young. It sounds very vain; but it has really made me self conscious in shorts, skirts, dresses, capris, etc. A tan seems to hide it and give it a more believable "sun kissed" look.
You mentioned mono. In all the searching and reading I have done, I came across something that mentioned it may be triggered by an infection or virus. I cant remember where I read it...there has been so many hours spent doing that. I havent had any memorable infections or viruses leading up to this; but it may mean something in your case. I was skeptical that the antibiotic would work for me and the derm thought it was a shot in the dark, but nonetheless a shot. I wonder though, if it would be worth a try for you?
Only a few new things to mention symptom-wise. It seems to be faintly showing up on my cheeks. Also, my legs have been aching pretty bad at night. ActivOn rubbed on the backs on them helps so that I can fall asleep. And, the skin on my shins/ankles where I have the most/darkest/largest telangiectasias seems to be thinner and tighter. From the right angle it is shiny and looks almost plastic.
I will let you know the results of the laser treatment, which I plan to try. Also, I will update you on the Cleveland Clinic results.
If you read this, let me know how you are doing.
"And, the skin on my shins/ankles where I have the most/darkest/largest telangiectasias seems to be thinner and tighter. From the right angle it is shiny and looks almost plastic."
The above comment you made reminded me of something. My aunt when she first started showing symptoms of schleraderma, that was how her legs were first affected. If it is some sort of autoimmune related condition, often times it takes awhile before bloodwork shows positive, as well, some labs aren't as sensitive as others at running certain tests. When I first read your description, it sounded similar to something I get, which is like a bleeding just under the skin. Mine can be purple and red. I also get petichiae, which is like pin drops of blood on the surface of the skin. But it's the description of thinness, tightness that really rings familiar, that shiny look that I remember from my aunt.
hope this was of some help,
Thank you so much for writing back. After seeing about twenty doctors, I finally got a diagnosis a couple of days ago. In my case, the livedo reticularis, along with my myriad of other symptoms, has been caused by an autoimmune disease called Sjogren's Syndrome. I had been to more than one rheumatologist, but they didn't bother testing me for it because I don't have the defining symptoms of the disease: dry eyes and dry mouth. Fastforward a couple months, and I went to see a neurologist because of nerve pain. He tested me for the syndrome along with several other diseases; however, the blood tests came back normal. A couple weeks later I saw a specialist in dysautonomia, and he tested me for Sjogren's again: this time, my blood test came back positive for the antibodies.
No wonder it's been so difficult to get a diagnosis. You might have the disease but none of the characteristic symptoms, and even if you're tested there's a good chance your blood tests won't reveal it.
Sjogren's explains everything that's happened to me, including my thyroid problems (Sjogren's frequently attacks the thyroid). Now I just hope something can be done about it.
Have you seen a rheumatologist? They may test for some conditions that you haven't been tested for yet. And like Deb says above, you may have completely normal test results and still have something, so as much as it's a pain I would keep getting retested every now and then (they recommend every 6 months) to see if anything comes up.
You may not have Sjogren's, but something real is definitely going on. I know the answer is out there. It's just so frustrating trying to find out what it is, when all anything reveals is that you're "healthy". And I understand too well the self-consciousness, and the fear. I never thought I would figure out what was wrong with me, and you might feel that way too. But I did, and I really, truly believe you will. Keep me updated.
Best wishes, Kayla
By the way, your description of your symptoms made me think of scleroderma also. It causes shiny, tight skin, and telangiectasia.
I found your posts when looking for answers to similar symptoms. I wanted to share with you all a resource that I hope helps all of you.
Check out Be In Health website by Henry Wright. He hosts conferences and has material describing how autoimmune issues typically have a spiritual root...IE unforgiveness, bitterness, anger, etc. It's worth looking in to! I'm going through the same process!