Discussions By Condition: Rare Disases

Ross's Syndrome

Posted In: Rare Disases 36 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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