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 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 Debbie, Thanks for your reply...I have just published my website www.ross-syndrome.com .You (and other people with Ross syndrome...) can contact me through ross-syndrome@hotmail.com Sip
    ross-syndrome.com 7 Replies
    • November 24, 2009
    • 09:23 AM
    • 0
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  • hello all,i am reading post after post of all my same symptoms here. i have recently been dx however, symptoms have been apparent for at least 10 yrs. i have tonic pupils which began large and are now small, sweating on right side of face zigzagging down my body to my toes, unressponsive reflexes, severe almost painful tingling of my skin during vigorous exercise, and some numbness is my hands. i am 38 yr old female. and i have to also add that 2 years ago i was dx with small lymphcytic lymphoma/chronic lymphocytic leukemia. i am currently waiting for a mri of the brain and a sweat test. on my own, i am reaching out to a different type of chiropractic, which does not involve adjustments of the spine at all, just small manipulations of the atlas bone at the base of the skull. this is hopefully to help open up the nerve pathways. and with the grace of God, help my body begin to heal itself. anyone wishing to chat..... reach out please. i would love to hear what your dr's have been saying to you as well.
    Anonymous 42789 Replies
    • December 30, 2009
    • 04:09 AM
    • 0
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  • HiI'm grateful for everyones imput into this site. It's given me answers I haven't been able to attain so far. Diagnosed with Adies syndrome at 14, I just had a dilated left pupil and my right hand didn't sweat at all. I'm now 52 and 12 years ago it started progressing with numb patches up my right arm and hand, side of body and right leg and foot. The patches on the right arm also don't register cold as in water or holding frozen peas etc. Everything just feels warm. My right leg ached constantly. I went to a neurologist but we had a clash and as it is a rather small society where I live, I didn't bother with another and just got on with life. Now reading everything here, I feel it is more like Ross's syndrome. The sweating zones I just put down to being perimenopausal. But not now. For the last 8 years, even in the middle of Winter, I've had rivers of sweat running down the left side from the shoulder and chest. The other sweat zone is on the right around the lower rib cage running throught me like a beam. Exactly the same size front and back but dry on the side.The stomach spasms, I didn't know even were connected so I just ignored them.It's only in the last week that the numb patches on my right leg have turned to fire with even the lightest touch. It feels like I have a current running down the leg and the stabbing pains have the leg inadvertently jerking.Thankyou all. I have learned so much.
    Anonymous 42789 Replies
    • January 3, 2010
    • 04:27 PM
    • 0
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  • Hi: My first diagnosis was Adie Pupil and now it's Ross's syndrome. Like you, I'm so embarrassed about my sweating. I could actually bring 18 tops with me to play 18 holes of golf. I'm at the point where I don't golf anymore. I have no reflexes whatsoever but no joint pain. I've been like this for about 20 years but have not taken anything for it. I have an appointment next week to see if the doctor can prescribe something to at least help a little. The other option is an operation which does not get good reviews. 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 42789 Replies Flag this Response
  • 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
    Anonymous 42789 Replies Flag this Response
  • from Wendy5.....after over 15 years of symptoms, tests and being dianosed with Ross syndrome my neurologist changed and with no testing i have now been told i dont have this disorder because my pupils are of equal size, which is pinhead size and fixed - end of - no further diagnosis, no further tests, nothing, left in limbo with all the problems ongoing. I am confused as nothings changed only getting worse.....everyones symptoms seem slightly different anyway and yet because my case is apparently not textbook i now do not have it...back to the hypercondraic diagnosis then i feel
    wendy55 1 Replies Flag this Response
  • Hi. Very interested in all the posts here. I was diagnosed with Holmes Adie Pupil (Tonic Pupil) around ten years ago, with no knee reflexes. After a few years I went on to develop sweating on the right side of my body and a chronic cough. I also have an intolerance of heat and regularly suffer with palpitations and trouble sleeping. I am currently seeing a lung specialist in London for the chronic cough (after a long, hard battle with my GP!) and one of the drugs he has suggested is Gabapentin! Interesting. Unfortunately, I am currently suffering with Labyrinthitis which means I am not well enough to start the drug therapy yet. After doing lots of research on the internet I think I probably have Ross' Syndrome, rather than Holmes ADie...... I am going to ask my doctor to refer me to a neurologist. There doensn't appear to be a cure for either of these conditions but it's always good to know what you have. Your alternative therapy sounds interesting and I will be pursuing other therapies in the future. Hopefully I will find some relief. I find botox is great (if expensive) for the excess sweating. Best wishes,Michelle. 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.
    Michelle40drane 3 Replies
    • August 20, 2010
    • 00:28 PM
    • 0
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  • Hi, I stumbled across this site this morning and thought I would share my expereiences and information with you. I too have Ross's syndrome or also called harlequins. After reading your input I have to say and I have had the gilrs at work check I do not have tonic pupil this is the first I have heard in my reading re Ross's. I started with excessive sweating on my right top side, i.e t-shirt wet one side dry the other. I went to my doctor who immediately told me it was not early menopause onset, but something nurological. Scared me to death. Went to Sheffield Halamshire hop where I was told point blank its Ross's syndrome and there is nothing we can do so go. I spoke to a doctor at Mayo in US and he faxed me details from this I have discovered that I got it after having FLU. I was told its all to do with emzymes changing in your body through your stomach/intestines into your blood streem. I have had it for 17 yrs + and still have ongoing side effect symptons, I DO NOT have full blown syptoms now but have nerve damage to right arm muscle at the top, pins and needles feeling in my head: left side. I also suffer from IBS but I had this first. Anyone who has had this a long time please let me know what if anything helps. Its only bad when really cold I love sunny holidays because I always think this makes it better. Don't quite know.
    joricho 3 Replies
    • December 8, 2010
    • 01:34 PM
    • 0
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  • Hi Wendy I too have suffered for 15yrs+ but have only read today about tonic pupil I have had ALL the tests and have been told by several nuerologists that I have Ross's. So a bit confuessed will try and post my story and see what people think. But I sound very much like you
    joricho 3 Replies
    • December 8, 2010
    • 01:43 PM
    • 0
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  • I look forward to hearing your story. It's always good to share experiences with fellow sufferers. It's such a rare disease and very isolating. Bes wishes. Hi Wendy I too have suffered for 15yrs+ but have only read today about tonic pupil I have had ALL the tests and have been told by several nuerologists that I have Ross's. So a bit confuessed will try and post my story and see what people think. But I sound very much like you
    Michelle40drane 3 Replies
    • December 8, 2010
    • 03:42 PM
    • 0
    Flag this Response
  • Could you please let me know what type of chiropracter you're reaching out to? I'm going to try alternative therapies as I'm very reluctant to take medication! Best wishes, Michelle. hello all,i am reading post after post of all my same symptoms here. i have recently been dx however, symptoms have been apparent for at least 10 yrs. i have tonic pupils which began large and are now small, sweating on right side of face zigzagging down my body to my toes, unressponsive reflexes, severe almost painful tingling of my skin during vigorous exercise, and some numbness is my hands. i am 38 yr old female. and i have to also add that 2 years ago i was dx with small lymphcytic lymphoma/chronic lymphocytic leukemia. i am currently waiting for a mri of the brain and a sweat test. on my own, i am reaching out to a different type of chiropractic, which does not involve adjustments of the spine at all, just small manipulations of the atlas bone at the base of the skull. this is hopefully to help open up the nerve pathways. and with the grace of God, help my body begin to heal itself. anyone wishing to chat..... reach out please. i would love to hear what your dr's have been saying to you as well.
    Michelle40drane 3 Replies
    • December 8, 2010
    • 03:44 PM
    • 0
    Flag this Response
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  • HiI am still looking for someone like me, Ross's no tonic pupil, I think I may be pre memopausal so need some advise, so ladies if you have been though the CHANGE please give me some advice what's going to happen to me this time?? I have right side ross's with left head tingling.
    joricho 3 Replies
    • January 18, 2012
    • 01:34 PM
    • 0
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  • Hi. I was hoping someone might have more information on chronic cough associated with Holmes-Adie syndrome.I do not have Ross Syndrome as I do not have any sweating problems. I did go through a phase of night sweats, but I am pretty sure this was stress-related.I was diagnosed with Holmes Adie in my left eye when I was 12 (I am now 48). I became far sighted in this eye and short sighted in my right. At about 29, my right eye followed suit with Holmes Adie. Both pupils are now small, although at times of stress my right pupil dilates and then opens up to the periphery of my iris in places like an irregular oil slick and my vision blurs more. I can feel this happening.All-in-all I haven't been too troubled by this apart from having to wear sunglasses a lot initially, and now difficulty seeing in dim light conditions. However, the main blight to my life has been a chronic cough. I had a particularly nasty chest infection when I was 33, and I have never stopped coughing since. I have been tested for everything...asthma, acid reflux, post-nasal drip etc, but none are the cause. I've had a bronchoscopy where certain white blood cells were found but was told they weren't a sign of infection but of a chronic condition (well I never!). I was sent to a dietician and found that reducing dairy help a bit, but I still cough 6 yes later. It can be so violent that I vomit. I would dearly love to hear from someone who has had this problem and if they have had successful treatment.Finally, a year or so ago, a colleague noticed that my right eyelid droops a bit. I have found out today that this is also associated with Holmes Adie and is Horner's syndrome. I've gone all this time and not realised all these things are related...and neither has my GP or chest experts!
    Kastcha 1 Replies Flag this Response
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