Harlequin Syndrome, etc

[melipnyc]

Hi, I've been diagnosed with right side Harlequin syndrome.  I'm interested in talking with others who have this rare condition.  I know that harlequin syndrome can have many causes, mine appears to be a lesion on the T1 area of my spine.  I'd like to know if others that have harlequin syndrome have other neurological problems?  I have been diagnosed with inappropriate sinus tacchycardia and hypotension.  On occasion, I have chest pain, fatigue, and shortness of breath, and weakness in my legs while climbing stairs in addition to the other symptoms related to the harlequin.  I'm 34 years old, female, and trained as an athlete.  Does any of this sound familiar to anyone?  
Thanks

[melipnyc]

anyone?  

[maltesesd]

I have recently been diagnosed with Harlequin Syndrome as well. The symptoms started after I mowed the lawn in the heat last summer. I actually brought some info to the Neuro. about this and she had never heard of it. She really didn't know what tests to do so she did an MRI of the brain thinking it might be a tumor, but found nothing unusual. I recently read about the possibility of it being a lesion in the spine. I'm 41, female, and have worked out for years. Other symptoms that have started and may or may not be related are: easily overheating and becoming weak, weakness in my legs when climbing stairs. I emailed Genetic and Rare Diseases Information Center, GARD,and it took awhile, but they did send me some info.

[jupiterx]

YES!  I have never been diagnosed and just recently started researching what was causing my face to turn red on just one side and I sweat profusely on that side as well.  I'm thinking about going to a Neurologist to see why this is happening to me.  I've had problems with my neck and have had my neck adjusted several times but this was a long time ago.  I do get frequent headaches and dizziness as well.  Hopefully when I see the doc I'll be able to find out WHY this happens.  It causes me to be miserable when it's hot or I get overheated.  

[sottesen]

I have just started showing signs of Harlequin Syndrome with flushing on only one side of my face but I also have a very slight droop to my eyelid and my pupils are now different sizes. It is slight but I notice it and I only really see the severe flushing when I run 10k or play hockey really hard. I have something called Wegeners disease where I have antibodies that attack healthy blood cells. It is under control but you mentioned sinus issues and that is where I have problems from the Wegeners. I have also had problems with my breath and weakness in my legs for most of my life and issues with my muscles locking up with no apparent cause which knocked me out of sports because I would sometimes seize up and wipe our really hard at inopportune times.

[Bookie18]

My daughter was diagnosed with Harlequin Syndrom (syndrome) a year ago. The doctor said that there is nothing to worry about. However, I find information on the Internet that makes me worry, e.g. about "Harlequi's Darker Side" article in the New English Journal of Medicine.
Can anyone share with me info in this are or better yet let me know the name of a doctor who specializes in this area?

[emilye]

I am currently doing research for an article on Harlequin's Syndrome and would like to speak with some people who have experienced it. If you would be willing to speak with me about your symptoms/experience, please email me at ebeATnyuDOTedu. Thanks-- I hope to hear from you soon!

Thanks again,

Emily