About a year after I first noticed the Harlequin Syndrome, I started to get out of breath and weak feeling when I go up stairs. I also have a bad heat intolerence, and twitches in my arms, Iegs, and stomach. I had been able to do high impact aerobics and now I am only able to do low impact due to the fact that I overheat and get out of breath. I also have athsma, but this feels entirely different. I read in "The Autoimmune Epidemic", that Autonomic Dysfunction (Dysautonomia) is actually an Autoimmune disease. The Neurologist said that my Autonomic Nervous System is over reacting. Harlequin Syndrome is thought to be local (face, possibly arm and chest). The other symptoms I have seem to be Autoimmune. ( the body treating itself as a threat and attacking itself) Does anyone else have this?

I'm brand new to this forum; I read your post about an autoimmune disease and that being the body attacking itself. I also have developed a severe allergy to raw fruits and vegetables; a carrot will cause me to become anaphylatic and my throat will close up. I wonder now if this is related to the Harlequin syndrome? I'd really really really like to hear from others with this disorder.

Hi Arbormom, I just noticed your post. I have been unable to get any Docs to put autoimmune and Harlequin together. They won't even say it goes beyond the local problems. But they have yet to find the source with alot of expensive tests we are still paying for! All that said, I have had allergies to raw fruits and vegetables all my life. They just itch and swell the local area, and do not go anaphylactic. There is another community that has people talking about Harlequin Syndrome that I am in. (Medhelp.org)You can search for Harlequin and find other people who have been discussing it at length.

Where on Medhelp.org do I find that thread? I couldn't find much information. I would love to talk to others with harlequin syndrome. I'm still trying to get my Dr. to believe it's a real problem. Yesterday I spent about 30 minutes outdoors cleaning some floor mats and I got SO hot and red on one side, it's simply embarrassing. I don't even want to exercise anymore, it's so noticeable. I'm wondering if I need to see a neurologist.

One topic is:Harlequin Syndrome/ Heart/ Respiration/ Help. You can find more info by searching: red/sweating on one side face, half face, and other combinations. You can also go to: http://rarediseases.info.nih.gov/Default.aspx and click on the GARD info. I would say going to a Neuro. would probably get things started. FEW and I mean FEW people have this because of something serious. I have been fighting this battle for a long time now and they can not find anything wrong yet. There are a few more tests that still need to be done, but I'm taking a break from all the testing again. Through all my research, the BEST Neuro's to get appts with are ones at a teaching or University hospital as they have a team that can work together and are most up to date on the latest findings. Hope this helps.

I have Harlequins and have been to see a Neurologist. He ordered a MRI of the brain and found nothing abnormal. He was aware of the one sided sweating but never gave it the name of Harlequin Syndrome. He told me the condition is almost always benign, only rarely is it caused by a tumor. Recently I saw a Neurosurgeon who said that the first Dr had the MRI done on the wrong part of my body--it should have been of the neck and upper chest. The consensus seems to be that it is a problem of the sympathetic nervous system, that the side that turns red is the normal side. I read all the information I could find on the web, which amounted to 5 or 6 articles that I found by using every search engine I've ever heard of. Also, I took pictures of myself while I was 1/2 red to show to my doctor. It is very exciting to actually find a community of people with this same weird and embarrassing problem.