Hello

I was diagnosed today with AMPPE. Right now I'm only seeing a waviness in a small part of the vision of my right eye every once in a while. This has been going on for 2 or 3 days. The doctor said he saw the classic lesions on my retina but is sending me to a retina specialist. Appointment is in two days. Do you have any advice as to what questions I should ask, additional tests I should take, etc? Also, reading these threads, I'm concerned that I could be at some beginning stage of this. While the general info on the web says this clears up without issue for most people in a few weeks, should I expect my vision to continue to deteriorate? Any advice you can provide would be helpful.

Thanks and good health.

Rebecca

Hello All:

I have AMPPE also. I just got it on Christmas Eve 2007. So it's been about 2 months. I basically have the same questions as everyone else here. I have been going to the Cleveland Clinic Eye Institute and I am surprised that they do not know much about this. I feel like it is a mystery.

Does anyone else see an area in their affected eye's vision where there is white and black swirling around? The area that is swirling doesn't change. It is not at all like a floater either. It is most noticeable at night or in the dark. It appeared simultaneously with the AMPPE. My doctor does not know what or why it is.

Anyhow, it is good to see some people are connecting who share similar experiences. There is so little available online. I would love to hear back from anyone. Hope to see more posts:) I'll check back another time.

God Bless,

Mark (oneof10)

Mark, I can't answer your questions about AMPEE, but the swirling lights are fairly common in people with retinal difficulties. These are just my opinions (I have retinal dystrophy): there are two possible sources of the activity--the retina or the brain. In the case of a migraine aura, for example, the phenomenon takes place in the visual centres of the brain, although it appears to be in the eyes.
Light displays are a result of neural stimulation of the retinal cells. There could be a number of different causes for this: vitreous tug, retinal tears, inflammation of the area, cells dying, effects of disease on the retinal neurons, pressure.

In the case of black & white...I get that too. It alternates, negative, positive like a film negative.My conclusion is it's an afterimage effect and the brain's trying to fill in the missing area. When your condition is resolved and the retina heals, you should be rid of this activity.

Don't know if that was helpful, or exactly what you were talking about.

KeelaC:

Wow. That is very helpful. It gives me some ideas that help me make sense of this strange disease. Are you a doctor or something similar? Thanks a lot.

Mark

Nope, not a doctor, just a know-it-all. :)

Rebecca:

How did your appt go? Any news from the doctors? How is your vision?


Mark

I was just wondering if anyone here had heard of AMPPE occurring in conjunction with Erythema Nodosum. I've been suffering with both and would love some additional information...research papers would be fabulous, but I've only found one that mentions both diseases.

Thanks for the help

student08