Archive Message Board
Due to lack of space on the Message Board Forum, some of the older messages have been archived here:
Sorry for the inconvenience. The messages prior to September 2004 are below:
Gemma, 45, UK: I was diagnosed about three years ago when having a routine contact lense check. Everything was fine up to a few weeks ago when i started getting very poor vision in my left eye so went back to my opticians who said perhaps i was wearing my contacts for too long, So saw me a month later and then decided it was the condition causing it ... so now i have blurred double vision in one eye. May 2004
Lillie, 56, USA: My mother is blind from glaucoma so I have had pressure checks every year until recently and now every 6 months because of the pigment dispersion. Plus other tests. I heard Dr. *** mention spindles to the nurse so I took a little more of his time. The spindles are in both eyes and still very dim. Which is good I guess since I am already 56 years old. I asked him what I could do to "for good health for my eyes" - his answer was "don't rub your eyes and don't play basketball" at first I thought he was joking (had a twinkle in his eye and I certainly don't look like a basketball player). After some more searching on the internet I found that pigment dispersion is more common to males ages 30s to 40s. and blinking can be a problem and that basketball and jogging can cause exercise-induced pigment liberation and result in a rise in IOP. So maybe I have had this pigment dispersion problem since a youth when I banged my head at least twice. July 2004
Fran, 52, USA: I was diagnosed with PDS and Krukenberg's about 10 years ago.. At that time, I was led to believe that I just needed to keep a closer watch on my pressure .. i.e. have glaucoma testing done every year. The last two years have resulted in a serious decline in my vision. I'm 52 years old and like Gemma posted above I have double vision in one eye. I've been told by several specialists that there's really nothing that can be done, that some of the pigment is adhering to the back of my cornea on one eye and affecting its focus. I was never advised early on that my vision would deteriorate so badly -- this isn't just a condition that should be "monitored" there are serious repercussions to it. July 2004
Sean, 43, UK: I was diagnosed with PDS this week (July 2004), following a check-up at ********* for a long-standing redness/soreness of the eyes. Apparently, the eye pressure was normal, but I was advised to have further checks in six months time. The consultant was very keen to make clear that PDS is not an automatic precursor for glaucoma. Indeed, it seems very rare that this potential complication arises. I came across this site while surfing for more information. It has been very helpful. Mild steroids for the eyes, which appear to be working. July 2004
Erin, 28, USA: I am 28 years old woman and was just diagnosed with Krukenberg's Spindle today. I live in ******, Idaho, USA. I found your web site extremley helpful and satisfying. Thank you so much for having it. I also thought it was interesting that you and I have a few things in common:* I am allergic to bananas, my mouth swells shut! I have had three concussions in the last four years (a few bangs to my head for sure). My blood pressure is very low. Most metals make my skin have a rash as well, except for silver. I found this out when I was two and my parents got my ears pierced, with gold. It is the same today. The doctor is going to be monitoring my eye pressure for the next six months, for now it is normal. Thank you for everything and the links to other sites that are so helpful in finding out what to do. July 2004
*See About Me page - Tracy
Ken, 42, USA: Thanks for the information on your website. Having PDS explained using more "common" language is helpful. I had an eye exam about two months ago and was told that I have PDS. During the exam, the technician spent about one-half hour testing my eyes, shining lights in them and saying "hmmm" quite a bit. Needless to say, when the doctor entered the room, I knew that something was wrong and by then I was having a mild anxiety attack. I needed to stop the exam because I had become so anxious that I wasn't feeling well. I go back for further testing on Wednesday. Like you, I do not have any family history of this syndrome. My eye health has always been good, with the exception of being very near-sighted and having an astigmatism. I wore corrective lenses since the age of 4 and had Lasik surgery on both eyes in 1998. Since the surgery, I have had excellent vision (20/20) and no health issues up until now. Again....thanks for the information posted to your website. As I find out more, I'll add my own info to your chat room. August 2004
Jean, 57, UK: Firstly thank you Tracy for such a brilliant website and also I hope the laser treatment went well. I am a homeopath and was diagnosed with Krukenbergs a couple of years ago. Because I was healthy and the optic nerve looked ok my opthalmologist didn't push me to have any orthodox medication and my pressures hovered around 21-25 for quite a while. Just before last Christmas they shot up to 40 and I was prescribed Travoprost. However they made my eyes very red and sore and I was not keen to continue. I take homeopathic remedies and other natural products and my pressures are due to be checked again next month, so I will keep you informed. Something I gleaned from the message board was the fact that this condition can cause blurred/double vision. I am experiencing this in my right eye and my opthalomologist told me it was my astigmatism getting worse. My optician said no that's not the case. At my last appointment my opthalmologist said change your optician. I have now booked to see a new optician who is also an opthalmologist, so I will see what she has to say and keep you updated. Could you tell me, how long did it take to get your eye pressures down using Xalatan? Many thanks. August 2004
I had a check-up 5 months after starting the Xalatan, and the IOPs had dropped from 27 and 21, to 14 and 12 - Tracy
Lori, Canada: My son was just diagnosed with PDS last week. He is only 11 years old. The eye doctor says he should start wearing sunglasses all the time. This has become a huge arguement as he says sunglasses aren't cool. We told him maybe not but your eye sight is. An artical I read says it is most common in White males between the age of 20 to 30. So he is very young for this by the sounds of it. August 2004
I mentioned this to the doctor whilst having the trabeculoplasty. He said that the youngest person he'd seen personally was 16 years old - Tracy
Jean, 57, UK: I wondered if anyone had been told to stop wearing contact lens after being diagnosed? Also what is the reason for being told to wear sunglasses? Was the young boy told to wear sunglasses all the time or only in strong sunlight? By the way my son was diagnosed aged 20. September 2004
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