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Hi Nicky,
I've had Adie's since 1992. I also tried the pilocarpine drops. It was nice having your vision improve, even if it was for a short time. That was the problem. It got annoying to have your vision change back and forth. You almost had to wear a little drop bottle around your neck so it was with you all the time.
Needless to say I don't use the drops anymore. I'm also not bothered by frequent headaches.
I just try to get my eyes examined once a year. I usually had to take my glasses off to do close work. Now that I need bifocals, I have to do that a little more often.
Sometimes I don't have a left knee reflex and my left arm does not sweat. This syndrome is supposed to be rare. Rare enough that they didn't spend any time trying to figure out the cause and long term prognosis.
I've tried to find information. In Lancet's they mentioned a possible indication of Lyme's disease.
My Opthomologist said it was nothing to worry about.
Who do you believe.
----- Original Message -----From: Nicky TraillSent: Wednesday, October 10, 2001 1:18 AMSubject: [adie_syndrome] informationHello allI am a newly diagnosed sufferer of Adies-Holmes Syndrome, I have been unable to find much information about it on the net and would appreciate any information on cause and, if any, information on how to help me improve my eyesight and consequent headaches. My opthamologist told me the problem will last for at least 12 months is this correct. I have been using a dilute solution of Pilocarpine, but often the drops are sometimes very painful and often worse than the disease! ! !I have tried the addresses offered by your group, with very little success and would therefore appreciate any helpThankyou Fuzzy
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