AMPPE - Anyone else suffer or know of it ????? - Eye & Vision Message Board

OzSlider · 01-11-2001, 07:20 PM

I contracted AMPPE (Acute MultiFocal Plaquoid Pigment Epiphilopathy ?? I think thats how you spell it all lol) in May of 94.... I have adapted well with my poor vision, and I havent as yet in nearly 7 years been able to meet anyone with this condition. But rest assured, it does exist. Originally from Australia, i was first diagnosed with AMPPE by numerous specialists. I have no medical training and all the info i find online is by far too technical for me to comprehend, especailly now that it is difficult to read a screen. lol.... For those that know of AMPPE, vision in my right eye is fair better than my left. The black spots in R are around my periphial vision, where as in my L Eye, it is all central. I compare it to looking at the sun, then looking at an object and just seeing the black spot.. I have been alone with this condition for nearly 7 years. I am fine, lead a very normal life, in fact, my girlfriend tells me, unless i tell people i am mostly blind, no one would ever know.... I have adapted that well.....

So if there is anybody out there that either suffers from or knows of AMPPE PLEASE drop me a line. I would like to know of any updates

GrnEyz924 · 10-14-2004, 08:45 PM

Hi,

I was diagnosed with amppe in 1998. It started in one eye and went to the other. My right vision is worse than my left. I had loss of vision more closer to the center than peripheral. I adjusted well to this and thought everything was going great until about 3 wks ago when I started having some wierd things going on with my eyes. Now I have a pretty good sized blind spot in my right eye and it really drives me nuts. I guess Im just wondering if you have had a recurrence and if you were young when you were diagnosed,(I am 41 now), and what symptoms you had? Both times I have been under exteme stress. The doctors are telling me now that they are not sure it was even amppe because they say amppe usually doesnt effect central vision so who knows.....Any comments appreciated.....

WorkinInJammies · 12-27-2004, 03:56 PM

Hi,

I was diagnosed with AMPPE back in the early 80s, but it took several years for the doctors to determine that I actually had a different disease in each eye.

The AMPPE symptoms were in the left eye and it seems to have remained stable since its onset. However, I have regular signs of activity in the right eye, which I was told long ago was subretinal fibrosis (another autoimmune disorder). I have progressively lost sight in the right eye and now have no central vision, some loss of peripheral vision, and puckers on the retina.

When I get sick or really rundown, or if I develop a cold sore, I have lots of flashers and there have been a couple of occurrences where I have lost a noticeable amount of vision.

I actually went to NIH in Bethesda twice before the doctors finally concluded that the disease process in each eye was different. You may want to talk to your doctor about my experience. My doctor hadn't found anyone like me as far as I know, and he says he takes my slides with him to conferences. Maybe your case is similar to mine in that the docs should be looking for the zebra at the sound of hoofbeats instead of a horse. Let me know if you would like additional information from me. Good luck!

dottie3456 · 01-09-2005, 04:48 PM

My son was told he has this on Dec. 1, 2004. Not much new to tell but, there is a new study being started at the Northwestern Medical facility in Downtown Chicago for this particular problem. My son has 20/400 vision in the right eye and 20/30 in the left. But the left only has a small area of vision left. About 5% on the field of vision remains. There is very little information you can get about this. Was nice to here from someone else that has this same problem. Our Family Dr. had not even heard of it. Thanks for being there. Mom

1/2blind canuck · 02-03-2005, 04:56 PM

Pending a final diagnosis from another retina specialist tomorrow, my recent vision problems have been attributed to AMPPE. Vision in L is 20/400 and R is 20/20 (w my glasses on!). Although I have and see spots on both eyes, the left is more hampered with one large, centrally located spot. I must admit that after suffering from headaches for 5 days, having my vision degenerate over the last few days, spending over 6 hrs. in 3 different doctors' offices today, and thinking the worst (ie. am I going blind at 29?), it seems at the very least I can look forward to a slow recovery of a couple of months with the 'not so good situation' being I make do with what I got - as it seems OzSlider has.

My question: what treatments have been prescribed? How effective?

Thanks in advance!
g$