Hi, I'm new here - just stumbled on the site while trying to figure out something about my sight.
For the last three years I've had awful problems with my eyes which have led to them closing for sometimes up to 17 hours a day! The doctors ignored me until I eventually insisted on being sent to a neurologist (I had a wonderful doctor at the time who has since left my practice. She really understood where I was coming from and was so caring - she referred me to the guy who she trained under.
Long story short, he decided I had "mild" blepharospasm which was making my eyes close for long periods. I was started on botox and it worked like a dream the first time ... then ... disaster! I was on holiday in Disney when my sight disappeared completely - several times. It was only a few minutes but soooooo scary! I was referred to a different neurologist who said, "Nothing is wrong. I can't do anything." I ended up going to see a lovely Irish doctor. She agreed to retry botox ... same thing - wonderful first time, second not so good (actually, dreadful) I was too scared to say anything in case I was left with no treatment so I just said it hadn't worked as well ... This time the first 30 days were HEAVENLY. Full sight until 9 at night ... however: "Sorry, all your problems with your sight are in your mind. There is no medical condition that can cause flashing lights (what about migraine) or sudden loss of vision." This has been going on for months. I found a truly wonderful doctor who argued that SOMETHING is going on - my depth of field is almost none existent. "Nope, no MRI - it's in her mind!"
My friend called me last week and asked if I'd been tested for GCA. Things have moved quickly since then. Went to see the doctor (may God forgive me I was quite rude to him ... nobody listens to me!" He told me to give him a chance ... I went through every symptom and he went quiet ... when I explained that according to the Consultant, there is NO condition which causes sudden vision loss or flashing lights he almost exploded. "What kind of doctor is she? You are presenting with at least 6 symptoms of GCA, even though you are a little young, it CAN happen. I need you to get an eye test URGENTLY (preferably today (I had to wait until yesterday) and have your bloods taken today ... we could only do that on Monday.)
The optician has left me stunned. She said I've been misdiagnosed, am presenting with at least 5 of the 6 main symptoms ... and what are they doing about the extremely badly swollen optic nerve at the back of my eye which is causing me vision problems.
Pardon? Turns out they noticed a swollen optic nerve going back 7 years ago but said nothing to me - didn't even refer me to the hospital! She said if I'd been treated at once my vision may be better than it is. This is very scary. She has referred me for an MRI with instructions to look at the optic nerve. Then she decided to do a depth of field test after I complained that I cannot see through the side of my right eye ... she couldn't believe how many I'd missed on both sides so got me to do it again - and then a third time. I told her I wasn't deliberately not hitting the button but she said that was obvious (and if I was faking I would not be able to replicate it so exactly) - my vision actually disappeared when I was with her.
I am disgusted that nobody thought to run more tests (I didn't know what to ask for). She said that although she's not an expert, unless we get me treated urgently I will lose my sight. Part of me is so angry right now ...
Sorry, I'll shut up! Thanks for reading this long and boring message.