Well, Bad news folks,
I'm really, really scared this time. I saw my ophthalmologist yesterday. What I was fearing has come true. The function & vision in my bad eye have gotten much worse over this last month, and now my "good" eye is affected as well (which actually came as a surprise to me, although I should have realized it & once I thought about it, it does make a lot of sense). I don't think I can go into too much detail right now, because this is all too new & too painful to even think about, let alone talk about right now. But basically, I am literally "loosing control of (both) my eyes," and will continue to do so, unless we can diagnose this & treat it. I most definitely have some kind of progressive central nervous system disease, although we don't yet know what. It is probably autoimmune. Supposedly, there is no other possible explanation, according to some of the neurologic symptoms that I now have in both eyes that can only result from disease of the brain stem. I wasn't sure that I believed it when my doc hinted at this a month or two ago, but his argument & evidence is now pretty convincing. He could even describe for me exactly what I was experiencing, without having even told him - just based on a quick exam. He says, it is only a matter of time before I can no longer control my eyes & as well as only a matter of time before I begin to show more systemic symptoms, whatever they may be. And there is no way to correct any of the visual or functional deficits that I have, because my eyes (especially my bad R eye) are literally changing prescriptions & alignment every few seconds. I don't know how I managed to hold it together during the whole appointment. I almost lost it while I was checking out (the receptionist asked me if I was feeling okay), but I made it into the safety of my car before the water works came.
I spent an hour on the phone with my PCP last night, talking about this new finding & other things. In fact, by now, I've talked with 4 docs, other than my ophthalmologist, about this (my PCP, my MD-homeopath, my father, and my osteopath). I was hoping that they were all going to tell me that this was a crazy idea, but instead they all agreed with my doc's assessment & plan. I think now I understand why my father said what he did the other week; Among other things, he's scared too, and he rather have this all be caused by something psychological, rather than physiological, because that would be easier to fix (my PCP said that he was trying to wear both the "doctor hat" & the "father hat," while he needs to just wear the "father hat" right now). I feel awful, but when my doc was telling me these things, part of me thought: hah! I proved you wrong, yet the rest of me was desperately hoping that I was wrong, and that my doc was wrong, and that my father was right.
On top of everything else, we finally concluded that I am completely resistant to opioids/pain medication. So I have begun to taper off the fentanyl patches. We really don't know where to go from here. So now I'm also really scared that we are never going to find anything that helps & that I am going to never get any relief from the pain. I know that I need to think more positive. I try, I really do. I'm usually pretty postive, except when I get upset, and right now, I'm beyond upset. I won't even start talking about the other things I'm worried about now, too. I just need to step back & take this all one step --- one day, one hour, one minute --- at a time. I see the neuro-ophthalmologist next week & the neurologist in 2 wks, and we will go from there. Next up is probably a new MRI & a spinal tap, but I'll know more shortly.
Prayers are greatly appreciated. Maybe if lots of people pray for me, He will listen. Although I'm certainly not the only one here going through very hard times & in need of prayers, so save some energy for them too! I wish that all of us could just get a break, God knows we've all been through enough!