Pastor Dan,
I am really sorry you are fighting this crazy battle. It is very discouraging when you know something is not right.
I would go to another facility if you can. A neuro-opt would be good.
LA
My MRI (13 months ago) showed nothing around the optic nerves that drew any mention from the radiologist.
My VEPs were normal, though I am suspicious of the facility that did the testing. They somehow messed up the SSEPs done at the same setting. They "lost" the reports, then said that they hadn't been dictated yet (something like 10 days after the tests), then they somehow found the reports without having to have them transcribed again. The report said that the SSEPs were unable to be interpreted because of a technical fault. Period. Couldn't get them to send copies; I eventually got them from my PCPs office.
My profile shows recent pix of my retinas. The ophthalmologist told me that the optic disc color is fine on one side, but then he paused for a second and said the other side was "acceptable" or words to that effect. I don't see much difference in the pictures, myself, but like tonyad, I don't play anything on TV.
I've had double vision, no matter which eye is open or closed. That seems much better since I received my new left lens with a prism factor added in. It's still not gone, though.
I've had a grayed-out hazy patch in the upper right of my field of view for many months, though that seems to have finally faded somewhat.
To answer your question, I have not been diagnosed with ON. This despite the fact that there has been something strange going on with the transmission of information between those retinas, which are said to be fine, and the wondrous world that is my consciousness. Something's still wrong, but so far, only God knows what that is.
Best wishes.
Do you have ON? I can not remember. I had increadible pressure that nothing would touch.
It is interesting to me that the pressure/pain got better when I started Klonoptin, Tripletal, and Avonex.
When I went off of the Avonex it started to return but once I started Betaseron it stopped again.
I have no idea what is up with that though.
LA
My eyeballs felt like they were bruised on the back sides, badly bruised. Hurt like a sonofagun. Once I slowly stepped up to 1200 mg/day, it seems to be a good 95% gone, & maybe more. Prism lens seemed to help too, even though that one still has me mystified.
Wish something would hit the tendonitis half as well, if that's what this is.
Shalom.
I was going down on my Neurontin doseage but had to take my normal dose today. I doubt the pain really is from the medication since when I first started taking it I had a real reduction in pain.
I also take Baclofen, klonoptin, and trileptal. I am having hot flashes like crazy!! I was awake most of the night going back and forth from sweating to freezing.
LA
Ditto what Pastor Dan said;
The Neurontin is a big help..I also take Baclofen which is a wonderful RX (for me anyhow).....Are you sure it's from the Neurontin (Gabapentin)?? Seems weird that that would actually "cause" that pain.
Buy then again I'm no doctor nor do I play one on TV... :)
Hope you get to feeling better and some answers.
~Tonya
I am worried about my rotator cuff in my right shoulder. Tendonitis might be it too. The Neurontin makes me feels weird when I am up to a dose that actually helps my pain.
Did the back of your eyes feel like something was pushing them trying to pop them out of your head. Or pulling on them?
That is what might felt like before I started my DMD's.
Ouch.
Iv'e been on Neurontin for months now; it's the only thing that's really helped with the pain in the back of the eyeballs. In fact, it;s the only thing that's really helped with anything for any notable period of time, at least until the prism lens was added to help the double vision. (I'm still unconvinced with that, but I think I'm reading better.)
Hadn't noticed any joint pain with it. I am experiencing what I think is tendonitis in nmy left arm the past couple of weeks, but it's more between the joints than in them, I'd say. It smarts pretty bad too, though.
Best wishes.