Discussions By Condition: Rare Disases

Ross's Syndrome

Posted In: Rare Disases 33 Replies
  • Posted By: Anonymous
  • September 10, 2006
  • 07:29 AM

Has anyone heard of Ross's Syndrome? It is characterized by a tingling, burning, and tightening sensation under the skin that affects the extremities. My situation involves the left arm and leg. The symptoms are exacerbated by the heat and the sun. I can be in a hot shower, or steam room and be fine, or outside on a sunny 60 degree day, and be fine, but if I step into the car that's been parked outside and it's 80 degrees, the flare-up begins, and can last for days.
Right now, my doctor (a neurologist) is treating me with prednisone, which takes away the symptoms, but leaves me hyper and sleepless. After 4 weeks on the medication, he wants me to stop for 4 weeks, and then start again for 4 weeks, until 6 months have passed. He's hoping the steroids will put the sypmtoms into remission. I am finding that after taking this medication for 3 weeks, that it is not working as effectively. After 5 days, the symptoms are back.
Has anyone out there heard of this rare syndrome?

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33 Replies:

  • I have recently been diagnosed with Ross's syndrome, myself, but my symptoms seem different than yours. My doctor is a neurologist who specializes in disorders of the autonomic nervous system--which Ross's syndrome is. His name is Dr. Roy Freeman--I suggest you google him--he has written papers on Ross's syndrome that are quite informative. Ross's syndrome is characterized by 3 benign--but annoying symptoms. 1) Segmental anhidrosis with compensatory hyperhidrosis. Which means that certain parts of your body are unable to sweat and, therefore, those areas of your body which can sweat--sweat triple time to make up for it. 2) loss of deep tendon reflexes--when doctor's check my reflexes, in some areas they are nonexistent. and 3) Adie's Tonic Pupil. This just means that my pupil constricts at times when it is supposed to dillate. It does not affect my vision--my pupils just look really small all of the time. As for treatment--there is little they can do. I have had botox on my face and neck to alleviate some of the excessive sweating and I have also taken a medication that helped with the sweating as well. It is called Glycopyrrolate. It is actually a medicine used to treat ulcers--but it helped a lot with the sweating. I hope this helped. Good luck.
    Anonymous 42,789 Replies
    • February 8, 2007
    • 08:35 PM
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  • Hey I got diagnosed with that last year, i was told that it was holmes Adies.Quirky ey. Some people at first thought i was taking drugs which wasnt true, One pupil was much bigger than the other. Thats the only effect i have. no sweating and i still have my reflexes although on my last check up the doctor had to check my arms a couple of times. I thought I had it bad then I listen to others I think myself lucky It could be worse.Take careJakI have recently been diagnosed with Ross's syndrome, myself, but my symptoms seem different than yours. My doctor is a neurologist who specializes in disorders of the autonomic nervous system--which Ross's syndrome is. His name is Dr. Roy Freeman--I suggest you google him--he has written papers on Ross's syndrome that are quite informative. Ross's syndrome is characterized by 3 benign--but annoying symptoms. 1) Segmental anhidrosis with compensatory hyperhidrosis. Which means that certain parts of your body are unable to sweat and, therefore, those areas of your body which can sweat--sweat triple time to make up for it. 2) loss of deep tendon reflexes--when doctor's check my reflexes, in some areas they are nonexistent. and 3) Adie's Tonic Pupil. This just means that my pupil constricts at times when it is supposed to dillate. It does not affect my vision--my pupils just look really small all of the time. As for treatment--there is little they can do. I have had botox on my face and neck to alleviate some of the excessive sweating and I have also taken a medication that helped with the sweating as well. It is called Glycopyrrolate. It is actually a medicine used to treat ulcers--but it helped a lot with the sweating. I hope this helped. Good luck.
    Anonymous 42,789 Replies Flag this Response
  • I also have just been diagnosed with this disorder. My left eye is being treated with medicine as when I go out in the sun or I am in bright light I am blinded and I have tonic pupil. My eye actually looks different and the pupil is off center as well as the color of my eye looks foggy. I have to wear special sunglasses that help with the glare. My left side of my body also does not have the same reflexes as my right. The sweating is also an issue with me and my body has no way of actually cooling off so I end up getting a strange feeling almost like a panic attack in the heat which causes me to pass out. I first started having problems when I was at the gym and working out. I started passing out if I was working out hard and they didn't want me to come back to the gym until I figured out what is wrong. It took 4 months and numerous tests and doctor visits to finally get my diagnosis. I do not know where this leaves me. I don't have any doctor's in my area that specialize in this type of disorder. I am hoping to find someone and I will definitely check out the neurologist that someone posted here. I am glad I came across this site.
    Anonymous 42,789 Replies
    • September 23, 2007
    • 09:47 PM
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  • I have not been diagnosed yet, but am researching rare diseases that fit my symptoms. If anyone can provide me with any information, i'd be eternially grateful.Lack of sweating on right, excessive on Left. red face on left with increase in temperature caused by hot climate/weather or exercising.Pupils are equal and reactive. No tonic pupil.tendon reflexes are equal.I had a large tumor - benign schwanoma in my chest removed 3-4 mos. ago. Was not involving the plexus, spine, lung or trachea, but near all (efacing trachea). Since it's been removed, no decrease in symptoms, although I'm told that could take time, or there could be permanent damage in which case, it may not improve.Now I'm getting headaces on the left side, the red side... example, I went out gardening the other day, not a huge work out but I'm in FL so it's hot here. Half my face was red and sweating... a headache on the left eventually developed that wouldn't go away for quite some time.I've had CT with and w/o contrast of the thoracic spine, MRI of the head (was normal), PET scan, MRI of the thoracic and chest, sonogram of the thyroid, EMG test on the left arm... all normal except for the tumor that showed in the chest, which was removed.was the tumor a fluke find and something else is causing my symptoms? or is it the cause of my symptoms... and I need to let more time pass before giving up on the red face and sweating thing going away?: )MelSharma1@gmail.com
    Anonymous 42,789 Replies
    • December 3, 2007
    • 05:09 PM
    • 0
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  • Has anyone heard of Ross's Syndrome? It is characterized by a tingling, burning, and tightening sensation under the skin that affects the extremities. My situation involves the left arm and leg. The symptoms are exacerbated by the heat and the sun. I can be in a hot shower, or steam room and be fine, or outside on a sunny 60 degree day, and be fine, but if I step into the car that's been parked outside and it's 80 degrees, the flare-up begins, and can last for days. Right now, my doctor (a neurologist) is treating me with prednisone, which takes away the symptoms, but leaves me hyper and sleepless. After 4 weeks on the medication, he wants me to stop for 4 weeks, and then start again for 4 weeks, until 6 months have passed. He's hoping the steroids will put the sypmtoms into remission. I am finding that after taking this medication for 3 weeks, that it is not working as effectively. After 5 days, the symptoms are back.Has anyone out there heard of this rare syndrome?How bizzare, i was diagnosed with Adies syndrome 18mths ago, but i have had this skin tingling for about 10years. It is extremely uncomfortable and feels like a rush of ants under my skin trying to get out. Iv only experienced this whilst doing physical exersize and experienced it yesterday whilst mowing the lawn. I have also had excesive sweating for about 10years but havnt noticed that it is more or less in one area, it is quiet embarrassing though as it literally drips off me and wets my clothes on a hot day, it wasnt until reading about Ross's syndrome that i made a connection. I will certainly draw this to the attention of my doctor, my neurologist was quiet excited at having discovered a case of Adies syndrome, i guess if he had a case of Ross's syndrome he would be very pleased.Does anyone know of any other symptoms? And is this a degenerative condition?
    Anonymous 42,789 Replies
    • February 29, 2008
    • 09:37 PM
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  • I was diagnosed with Ross syndrome at Mayo Clinic in 2004, after suffering with symptoms of facial flushing, tingling & numbness on one side of my torso, fatigue, gastrointestinal cramping and an irregular sweating pattern. The doctors at Mayo told me that it was not degenerative, but there wasn't much they could do about it and I would just have to learn to live with it. I have since gotten some relief by taking Gabapentin (300mg 3-4 times a day), which mollifies the symptoms somewhat. I was first diagnosed with Horner's disease(tonic pupil) in my late 20's, but the eye doctor told me it wouldn't affect my vision & not to worry about it. I developed an irregular sweat pattern about age 50, but the poor tendon reflexes weren't discovered until I went to Mayo at age 59. My symptoms do not involve any pain, but cause me discomfort and eventually make me feel ill with flu-like symptoms or like a stomach virus. Almost every afternoon, I have to lay down and lose consciousness, however briefly, to get relief. About once a month, though, I am down for 8-12 hours before I get any better. It has now been almost 9 years and a couple of dozen doctors since I first sought medical attention for my condition. Recently, my wife referred me to an alternative practitioner known as an "energy healer". I am not sure what exactly it is that she does, but it gives me relief for several days, sometimes weeks. The neurologist I have been seeing for the past few years in moving out of town, so I am thinking about consulting a rheumatolgist just to approach this from another angle. I hope this helps some of you and doesn't discourage others. I would welcome any helpful suggestions from those with a similar affliction.
    loafbread 1 Replies Flag this Response
  • I have been trying for years and several Doctors to figure out why I have this problem of sweating on one side and not the other. Then I read your e-mails and my jaw dropped! Here are all the symptoms I have been having and now know why! I will take this to my current Doctor and hopefully can find some relief for the sweating! It seems like I can not go anywhere because of this. I have cut my hair short, have a fan on my face constantly to help (I sweat on the right side only). It seems like no matter what I do, I end up in front of the fan to cool off. Thanks for the e-mails they have been very helpful.
    Anonymous 42,789 Replies
    • August 18, 2008
    • 04:45 PM
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  • Hey, this forum is quite interesting. I was diagnosed with so-called Harlequin syndrome last year, which seems to be related to Ross's syndrome. In my case it started 5 years ago (I am 25) that I experienced facial red flushing and excessive sweating on the right side of the face only when doing sports or being otherwise very active, which is the typical Harlequin syndrome. Since one year some additional symptoms are showing up, namely flu symptoms (excessive slime), a constant irritation of the right eye (conjunctivitis), and numbness in the right arm and right leg. So far my case is classified as Harlequin syndrome, but this doesnt explain the worsening over time or the other symptoms. Reading your posts I recognize some patterns (numbness, flu symptoms), and as the symptoms are related anyways, it seems to me that I should read more about the Ross's syndrome. loafbread, what do you mean by "lose consciousness"; just a nap, or something else? In my case it is clear that activity is making the symptoms worse, which is why I feel very good in the morning after having slept a long time, and bad in the afternoon when I am the most "awake". For me it took also a while till I found a doctor who was aware of Harlequin and Ross syndrome at all.
    Anonymous 42,789 Replies
    • September 22, 2008
    • 00:32 AM
    • 0
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  • Hi everyone, I am a 43 yr old male presently serving in Iraq. I had a hard time acclamating to the temperatures over here and found I just couldn't keep up. I discovered after about a month of being here that my body was no longer sweating on my right side! I have been drinking just as much water and gatorade as the rest of the guys but was feeling lethargic and ready to pass out alot! I reported to medical where I was diagnosed with Ross Syndrome. I have since been reassigned to other duties to keep me out of the sun. The other odd thing the doctor pointed out was the restricted pupil and lack of reflexes. I am really concerned about what this will all bring when I get home. Any input on the long term affects would be great. I was told this is a neurological problem but what causes it?? Has anybody been stricken with this by a accident or hard fall??
    Tommyboy 1 Replies
    • September 26, 2008
    • 04:57 PM
    • 0
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  • I am 37 years old and have been having poblems since I gave birth to my second child 2 years ago. I have Adies and Tadpole pupil, I sweat only on the left side of my face, I have no reflexes at all anymore, I also feel faint after being active for a while. My digestive system gets spasms and I have lost 60 pounds since I became pregnant with my last child. My EEG came back abnormal and my brain MRI had little white matte My neurologist Dr John Oakley with the UW in Seattle with Dr Weiss the neuromuscular specialist both think it is Ross's Syndrome. I will go back in January to check by doing the skin test. They said it is very rare and by the sounds of it and the information of what is on the internet it does sound like their is not to much out their. If anyone knows of anymore info regarding this disease please post it. The unknown is the scay part and this illness is so frustrating on us and puts a toll on the family. Well good luck to all.:)
    Debbie30 4 Replies
    • December 22, 2008
    • 03:28 AM
    • 0
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  • My jaw literally dropped when I found this website. I have had numbness in the right hand, right side of my face, and my right leg. I only sweat on my left side ( which is embarassing). My doctor's have not yet diagnosed me with Ross Syndrome, but they think that's what it is! I was relieved someone finally put a name to my condition. I was actually going crazy, cause I have been to numerous of doctors & specialist in the past five years. Only for them to all say I was completely healthy! Just when I was about to give up my current doctor caught something with my eye!
    Deby83 1 Replies
    • January 10, 2009
    • 05:59 PM
    • 0
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  • i am a 37 year old who was diagnosed with Ross syndrome around 15years ago. I also discovered the symptoms whilst working out at the gym. I am currently under a neurologist who says that not much is known about this disorder and how it affects each person as it appears to affect everybody differently. I have all of the usual symptoms of the Syndrome, such as Aidies pupil (infact my pupils are now the size of pinheads), loss of sweating to the left side of my body and lack of reflexes but i have also began to suffer from reflux and irratable bowel due to spasms, I have constant stomach ache and also intense pain in the left side of my jaw, kneck,shoulder and chest which becomes worse when i feel i am going to collapse. I have possible postural hypertension which means i have difficulty functioning throughout the day but especially in the mornings and sometimes have to lie down for several hours before i can stand even though i have been in bed all night. I feel lethargic all day and often feel like i am going to pass out and yet my body becomes agitated and restless at night and i have to take muscle relaxents to get to sleep.My consultant has told me the condition affects the autonomic nervous system and is progressive but i still dont really know what that means for me. He wants me to go to a hospital in London which specialises in neurological disorders and learn more about the condition and how to live with its symptoms
    wendy5 3 Replies
    • January 14, 2009
    • 07:53 PM
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  • This is a reply to Wendy 5, WOW I logged on and read you posting today and felt like I was reading my own posting the one I wrote. I would really like to talk to you more if you can e mail me I would love it. I am seeing doctors at the UW and go in for the skin biopsy test on the 29th in a couple weeks. I will also see the digestive doctor again because of the painful spasms I get in my abdomen. I would love to share whatever info I can give my doctors. I feel at times like I am slowly losing this battle. I am afraid to eat half the time and get so tired by the end of the day. I think my biggest question is why? Why is this happening to me to us?
    Debbie30 4 Replies
    • January 15, 2009
    • 03:49 AM
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  • this is a reply to Debbie83, what a relief to actually find someone who understands how I feel. I too thought i was crazy or even a hypercondriac who was imagining all these symptoms I would love to talk about this further so if you could forward me you e-mail address it would be great
    wendy5 3 Replies
    • January 15, 2009
    • 05:54 PM
    • 0
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  • How do I forward you my e mail without it blasting out into the world wide web? LOL I also wanted to let you know I am going to print all these threads that have been posted of everyones story to show my doctors and the University of Washington when I see them on the 29th. I honestly felt like I was going nuts thinking I am the only one with all these problems. Also interesting we are the same age female with the same exact symptoms give or take a few.
    Debbie30 4 Replies
    • January 16, 2009
    • 03:56 AM
    • 0
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  • How do I forward you my e mail without it blasting out into the world wide web? LOL I also wanted to let you know I am going to print all these threads that have been posted of everyones story to show my doctors and the University of Washington when I see them on the 29th. I honestly felt like I was going nuts thinking I am the only one with all these problems. Also interesting we are the same age female with the same exact symptoms give or take a few. Hi Debbie30 if you would like to send your e-mail to wendy5@fsmail.net i would like to talk to you further if your happy to. Thanks wendy5
    wendy5 3 Replies
    • January 16, 2009
    • 05:55 PM
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  • Having a hard time getting a diagnosis for my own condition, I found this blog. To all who are sharing information on Ross's Syndrome, there is information available at the Mayo Clinic website under Anhidrosis. Good luck to all of you.
    Anonymous 42,789 Replies
    • January 28, 2009
    • 09:13 PM
    • 0
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  • hi my name is erika henderson i am 35 yr old and i have ross's syndrome, i have adies, sweat only on the left side of my boby the r leg doesnt sweat at all, and when i sweat is terrible i also have a terrible pain on my jaw my r ear is with a throbbing tingle numbness stomach spams u name it ( sorry if my writting is not good but im from mexico :) i have been mary for 16 yr and i live in florida i really will like to know all about ross's syndrome and is very sad that there is hardly anything about it .... please let me know how ur visit went ... thank u
    Anonymous 42,789 Replies Flag this Response
  • Hi, Since March 2009 I have several health-problems. Cause of these problems seems to be the Ross Syndrome. I was already diagnosed with Holmes-Adie Syndrome 20 years ago. In my own language - dutch (Netherlands) - there is almost no information about this Syndrome. Even in English it's difficult to find the proper information. Bit by bit I have gattered some information. It seems that Ross Syndrome has many different appearances ('secundary' health-problems). I have plans to start with a website which brings together more information. And I would like to gather information from all kinds of sources, not just from the Internet.... Also from specialists and from other patients. I would like to know more about this Ross Syndrome and - if possible - in simple words. It's difficult to 'read' scientific reports. That's why I like to get in contact with anybody who has been diagnosed with this Syndrome. Would you like to help me? Please get in contact with me through this site. All collected information will be handled confidential...If published only with permission from you. I hope to hear from you. Sip :confused:
    ross-syndrome.com 7 Replies
    • November 21, 2009
    • 04:31 PM
    • 0
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  • :) I would love to help I have had Ross Syndrome for 3 1/2 years now and any information I have I will give. Debbie Hi, Since March 2009 I have several health-problems. Cause of these problems seems to be the Ross Syndrome. I was already diagnosed with Holmes-Adie Syndrome 20 years ago. In my own language - dutch (Netherlands) - there is almost no information about this Syndrome. Even in English it's difficult to find the proper information. Bit by bit I have gattered some information. It seems that Ross Syndrome has many different appearances ('secundary' health-problems). I have plans to start with a website which brings together more information. And I would like to gather information from all kinds of sources, not just from the Internet.... Also from specialists and from other patients. I would like to know more about this Ross Syndrome and - if possible - in simple words. It's difficult to 'read' scientific reports. That's why I like to get in contact with anybody who has been diagnosed with this Syndrome. Would you like to help me? Please get in contact with me through this site. All collected information will be handled confidential...If published only with permission from you. I hope to hear from you. Sip :confused:
    Debbie30 4 Replies
    • November 23, 2009
    • 03:53 AM
    • 0
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