Hate to post like this. Seeking some help due to my recent diagnosis of a rarer auto immune disease.
I wont get into it too much here due to private reasons as I mentioned, but I can answer more questions in a private message. But this started by attacking my ocular nerve first, and it has done some damage that may not recover as it is an auto immune disease and attacks the myelin. Though they said its still a "maybe" as it could take 6 months to a year. In the meantime, I'm worried about a relapse as it's unknown if this was an aggressive attack or not since they had to work fast and replace all the plasma in my body. This is the major health concern, and the medication is a bit intense on what I'm taking, though the other big issue is my eye, or eyes. I nearly went blind in one eye (technically am, but its not completely black), and if this was an aggressive attack, a relapse could attack both optic nerves.
Right now, the concern is the eye. The occupational therapist mentioned to keep it open as "If you don't use it, you'll loose it." But the eye itself is ultra blurry and sensitive without healing progress other than the night I got to the ER over 200 miles away (it nearly went black that night). What makes this difficult is how sensitive it is, plus the dilation is off due to myelin damage. More on that later. But I can technically see shapes, though really blurred, and I can't read with it. This is causing dizziness, tiredness, and is a bit taxing as I'm not used to this.
I did find a meme that was blurred and helps illustrate what I'm seeing on a "best" day with it. I had to use some online editor to add some of the things I see so I can describe it better. So I'll share the "clear" image first of the good eye, then the bad eye so people can understand it and know why the occupational therapist is suggesting what she is suggesting.
The good eye would be something more normal (meme image though warning) like his https://i.imgur.com/LJAhJtH.jpeg (alt here if link doesnt work https://iili.io/qLX0jzQ.jpg ) which is just a normal picture. You can make out the details pretty easily, and read. Now the bad eye takes a bit of explaination of whats going on, as its a good blur on the image, then I added dumb effects to show what I'm seeing, but theres more too it then that, and Ill explain.
The bad eye looks like this https://i.imgur.com/fGyYklj.png (alt image here if link doesnt work https://iili.io/qLXzrbe.png ) Glaring thing, the shape in the middle off center to the eye. I need to mention, its more "transparent" than what I have displayed, and the coloring is similar to when you blind yourself and you get that after image of gas mixed with water colors, in this case more greenish-purple with a yellow ring around it. Now around this ring it's blurrier with slight kaleidoscope of static. But the transparency of it "erase" whats behind it, so if I'm looking at someone's face, its distorted with no features, like a darker, almost gray zombie like skin patch with no face, and the head is sometimes hourglass shaped due to other distortions (read on). Sometimes around the patch, the color just disappears, turning everything behind it into black and white, but not the entire blurry vision.
The second issue, the blurriness of the image over all. What I see is a little more blurry then that, and sometimes its like a haze of smoke, sometimes it goes darker. If its stressed like being exposed too long to outdoor light, the eye gets darker like sunglasses, which freaks me out a bit. This is both due to the nerve itself and the eye dilation issue. My eye doesn't close when exposed to light, it actually opens a little more and slowly according to the doctors. It feels like when you get your eyes dilated at the optometrists office, and always feels heavy and tired. I should mention my eye lens and retina is fine outside my regular astigmatism, so its mainly the nerve and the dilation.
Third issue, the little spinny blurry circles and darker spot in the right upper corner. I see 4 circles in those general areas, and they're just like how science shows black holes, with the blur around the event horizon, cept with mine, it sucks in images to shape like an hour glass. Often these spots "erase" whats behind them, and sometimes makes lights and shapes look really far away. The far away thing sometimes happens with the large distortion near center of the eye, but the little black hole looking shapes cause more. I see a darker spot from time to time in the top right corner of my vision. Its dark more like a gray than a smoke haze or sunglasses dark, but it does appear from time to time Im noticing. Both eyes open, it causes me to have some dizzy and confusion spells. I cant get used to it, and it feels better if I close my eye, but I dont want to loose the vision completely as the peripheral vision I can still see shapes, but its always tired and Im not used to sense of space or depth perception yet. I bump into things and its tricky to gain footing in public.
Im concerned with a relapse taking my vision. Even more worried if this happens while Im asleep and I wake up with one eye, or, both eyes blind. That, is a frightening thought. The occupational therapist suggests I need to get some glasses, and thats the purpose of this S.O.S. I think its dumb to some degree, but what she said makes sense.
The therapist wants me to get transition lenses without visible frames for the day, as I NEED shading in daylight whenever I go outside. Since I can "see" at the peripheral vision, I need something without frames that cover as much of the eyes as possible. I asked about using a clip as I have one pair of glasses, but she said no that a clip wouldnt work as I need to protect the sides of my eyes. I asked about a wrap, and the wrap frames are too thick so no. Then I asked about prescription sunglasses (which I think are dumb as I never thought to ever get any) and she said yes as I need to have something darker. But, they have to be those 80's huge ones (I dont like those kinds of sunglasses personally) because there is no frame, and they cover the most visual field.
I can see why it's needed due to my messed up eye dilation, and how fatigued my eye gets in light. I fear, and she does as well, to cause too much strain on both eyes. I'm worried about stressing my good eye too much, and because of the blur of the bad eye, carrying over and negatively affecting the good eye. The bad one being over stressed could also go to black. Sunglasses do help, but since I have an astigmatism, the less stress and strain, the better for my vision over all. Honestly, sunglasses are more inexpensive than transitions. She only wants transitions since they can be worn indoors as well. I prefer just sunglasses as I have one pair of regular glasses.
I think its dumb though because I never would have ever thought to get prescription sunglasses, and I just find them odd, in my personal opinion. But here, makes sense. I went to get a quote from the local optometrist, and of course, they don't have the glasses I need. Unfortunately, I can't go elsewhere as the only other place I could get it is over 3 hours away (where the hospital is located) and I have no means of transportation beyond a medical lift ride (which requires insurance approval for appointments), so she recommends to use the one here, and its the only one that will do it (Walmart wont).
It sucks donkey balls as it means I have to get transitions, and they make you pay a membership fee. But I got the quote, and the most "inexpensive" option, which wasn't as bad as I thought. Normally transitions are like $600, and what they have would be like the base of what I need. The sunglasses they have here aren't good enough and honestly, kinda shitty. I checked online for options, but they don't have sunglasses that big for prescriptions (like zenni), so I unfortunately think I'm stuck getting some shitty looking transition lenses to go outside and wear outside daily to help and protect my eyes. I should also mention, here insurance doesn't cover it unless I am a child or had major eye surgery.
I have a photo of the quote and price here https://i.imgur.com/8tdqXJ8.jpeg (alt pic here if link doesnt work https://iili.io/qLXNlUl.jpg ) Its not $600 thankfully, but they charge you a membership fee/s, but that covers the price of the frame itself. Very basic glasses, but if it'll help retain my vision, I need to get it and still continue my eye therapy. But unfortunately, I do need shades for the day due to my dumb eye being how it is. Even at night, looking at a screen is buggy, and I dont think I could even draw anymore without getting a headache. I know I cant read with it, and it always feels tired. I hate it. But its not 100% blacked out blind, but blind enough I cant do much with it.
With insurance not able to cover and me needing the $305, I unfortunately, need to beg. If anyone here is willing to chip in, PM me and I can tell more and give out information. I honestly hate this. I have nothing to offer in return. I have no income, and I'm not sure how this disease is going to affect me in the future. I know right now it's really been triggering my C-PTSD and causing me too much anxiety and stress, and I've been focusing on the glasses mainly to try and distract myself from the other issues associated with the disease...
I don't know what else to do. I'm asking around for help if anyone wishes. Obviously don't have too, but I have to try at least. At the very least, this post works as another health update. I should mention MRI images didn't show the disease in the spin, which means it's focused in the brain, and the issues I've been experiencing that I thought were related to my brain tumor, are from this disease. Just the worry of relapsing and loosing my vision completely is really getting to me.
If anyone wishes to help, just PM me. I can answer questions there if need be. Not sure what else I can do at the moment. I don't have anything to offer, just... begging. I hope I can get out of this negative emotional state I'm in eventually, so I apologize if I'm coming off as a huge downer. Thank you all for reading. I'll delete this post once things are set and if I'm able to get the glasses. I'll continue to give more health updates with future neurology visits. Again, thank you for reading and PM if you wish to help and for more info.
UPDATE: I had a check up with two ophthalmologists to check on the progress of my eye as to see if it was healing or getting worse. A younger doc and an older one. Did a vision test with lights on both eyes, and the younger doctor saw me first. Stated there is in fact vision loss and recorded it in my chart. Examined my eye and nerve, stated the swelling is down due to intense steroid treatment, however, with severe attacks on the optic nerve like that, the nerve tends to go into atrophy, meaning it's still at risk of going blind and dying, so he was checking for "spots" to indicate if there was atrophy or not, which does result in vision loss.
He stated not to be a gloom and doom doctor, but the nerve is in fact in atrophy. He implied my attack was aggressive, meaning there's an 83% chance of a relapse, and that's, frightening. There's also the chance that my good eye's vision is going to go bad due to the left eye being so screwed and a relapse can certainly make both eyes blind, which is still terrifying. He went to get the other doctor to double check his findings.
The 2nd came in, older doc, introduced himself, had a fake looking smile on him and said I'm getting better. Which felt very scripted too me, since the younger gloom and doom doctor wasnt smiling and seemed unfazed. Older doc was more positive, basically saying the same things as the younger, but kept it more like I will improve, but part of me was thinking he's just saying that to try and keep my spirits up.
Both did agree with the occupational therapist, but they stressed it even more that I need these glasses. Older doc explained since the nerve is in atrophy, the vision loss could expand and stress the good eye since there's still some vision in the right eye (bad though), that crosses over. They don't agree with the types of frames she (occupational therapist) wanted, but stated that I get prescription transitions as that'll make up for the frame being there, but they wouldn't do anything with the bad eye as these glasses would only serve to hold me off in the day until "everything is done and done" as the older doctor put it.
Meaning come next March, it'll be known if my eyesight will have recovered some or got worse and it'll be done and done and at that point they want me to do a big true eye exam to get better prescription glasses instead of cheaper ones that I'm asking for help now with. Because of that, I am debating to get a gofundme later on since those types of glasses are expensive, but they would serve better in the long run. The younger doctor did check my good eye's vision and update my prescription at least, but ignored the bad eye since it could or could not recover, so it's better to wait for that eye. Both advised me to try and get cheap glasses now since summer is coming and that means more sunlight.
As the older doctor demonstrated to a nurse with a little pen flashlight, my bad eye "doesn't constrict at all, but straight up dilates" due to nerve damage and opens up with light. When that happens in the day then the eyesight does get worse in the bad eye and everything starts to go dark after a while on it, hence the need for shades and now transitions.
So the purpose of these cheap glasses was stressed even more as I need them at least until March so as not to over work the good eye and keep the bad eye shaded. I have another follow up appointment in late August to do the same tests and check the progress of the bad eye to see if its getting better or worse, but that time they want me to see a higher up doctor, this one being a Neurology Ophthalmologist, only one of two at that location, no clue why, but I have to see one specifically then. For the cost goal, I've made some progress at least to get the glasses, so thanks to those that helped ($205 left to go!), but still short of the end goal for what is now going to be known as temp glasses.
I'm still considering a gofundme later for the better glasses come March. If I manage to get these cheap ones, then at least I'll have those come March to hold me off until I make a gofundme and have both a new prescription, knowledge if my bad eye has gotten better or worse, and a new paper quote to share as well for the cost. Too soon now for anything, just I hate to do a gofundme as the last time I did it, personal info got out and that lead to some bad stuff. It's still 11 months away though, so who knows, maybe I wont need one at that point, maybe I still will for another reason (both docs did stress that I absolutely MUST be closer to that hospital, as the older doc stated that should anything happen to me, no other hospital would know how to treat me due to this rare auto immune disease. Getting to that point, well, that currently would cost $52k, which is a lot, but up there is expensive as shit and I'd have to be at least an hour away from that hospital, then have funding for a vehicle and place to say, but with this disease, my limitations aren't known. At least for that, that'll take a while before anything is known and I hope I don't get to that point. A lot of things are up in the air currently, but wanted to share an update.
I have another appointment soon up there, but this time with the Neurologist team to learn more of this disease and what it's doing to my brain. The concern is whole brain atrophy, which is, terrifying. I'll post another update after that appointment. Could also just be a medication adjustment as those docs are kinda direct to the point and don't say much from my experience with them at the hospital last month.
