Today I’m questioning so many things. This double vision problem is making me feel more and more like I’m some sort of freak in a world of normal people. I have to drive with one side of my sunglasses covered with dark paper or I wouldn’t be able to drive at all. And I still feel very vulnerable. I’m not seeing my friends as often and I worry that it’s getting harder to focus and wonder if that means my eyes are getting worse. Last night I asked myself how I got into this mess and whether or not I’ve done everything right. I felt so sure my eyes would be back to normal by now. So I sat down and went over the steps I’ve taken and this is what the situation looks like.
Friday, July 26th – I woke up with double vision, but, since I’d had it once before years ago, decided it would go away in a few days like it did back then. It didn’t. Tuesday, August 3rd – Went to see my ophthalmologist. She found no visible injuries or disease of the eye. Upon my telling her about a new medication I was on that had double vision as a side effect, she called my doctor and they decided that I should stop it. It would take ten days to leave my system. It did. The double vision didn’t. Thursday, August 19th – Had a head and orbits MRI scheduled by the ophthalmologist. Friday, August 20th – Eye doctor diagnoses Graves’ Disease and Graves Ophthalmopathy, due to enlarged muscles behind the eyes. She suggests I see my Internist. Monday, August 23rd – Saw my doctor (after waiting for an hour!) who wouldn’t make a diagnosis without thyroid blood tests, which I had. Tuesday, August 24th – Doctor had his nurse call to confirm the Graves’ Disease diagnosis. He called in a low-dose thyroid prescription and referred me to an endocrinologist. I call the endocrinologist’s office and the soonest he can see me is September 16th! Thursday, August 26th, a.m. – My internist’s referral desk patient advocate somehow manages to get the appointment moved up to September 8th. Thursday, August 26th, p.m. – Endocrinologist’s triage nurse calls to say that I need more blood tests and that I need to call to schedule a two-day thyroid uptake and scan test at the hospital, which I do. Friday, August 27th – Hospital calls and says the test will have to be delayed 7 days because of the thyroid pills my doctor gave me. Test is rescheduled for this coming Tuesday and Wednesday after Labor Day. Friday, September 3rd – Have still more blood drawn for tests.So that brings me to today, Sunday, September 5. Tomorrow will mark a full SIX WEEKS that I’ve had double vision without ANY treatment. Six weeks may not sound like much to you, but trust me, it’s forever when it’s your EYES! I’ve jumped through so many hoops, spent so many hours on the phone, given so much blood that a vampire would swoon, picked up a disease along the way, had my head and eyeballs scanned and will be tested Tuesday at 6:45 a.m. and 12:45p.m. and Wednesday at 6:45 a.m. again. Wednesday I’ll also see the endocrinologist at 1:45 p.m. and then my doctor the next day. ALL OF THAT and, as of today, my eyes are exactly the same, if not worse.
If, by the end of this coming week, no one has helped me, I don’t know what I will do. I’ve tried to be patient. I’ve had faith. I really have done my best to hang in there, but it’s getting harder and harder.
So, at this point, my question is – At what point do you just give up hope?
Give up hope? Never!
hope is eternal
Definitely do NOT give up hope. There IS an answer to your problem. Keep persevering. Suggestions: 1) Get a second (and if necessary, third) opinion from another opthamologist in your area but do some research on who you select to find someone who is highly and diversely trained. Take ALL of your test results with you. 2) Make an appointment with a renowned neurologist in your area, too. Take ALL of your test results with you.
Ask people you know the names of doctors they go to and if the doctors are compassionate and listen to the patient. This will help you find names of good doctors.
Also, research “double vision” on the internet. Since you can’t see well, have a friend help you. This will also give you clues as to what may be causing the problem. I’m not recommending self diagnosis, but information will help point you in directions that will get you answers and the correct treatment.
Sheryl – Thanks for taking the time to comment. Believe me, I feel like I’ve read almost everything there is about double vision on the Internet! I KNOW what is causing it. The muscles behind my eye are enlarged due to Graves Ophthalmopathy. My ophthalmologist is quite good and very qualified and she’s the one who made the diagnosis based on the MRIs. No, my problem is all the time it is taking to get in to see the specialist who is supposed to be able to help! It seems to be par for the course for specialists’ offices to give a suffering person an appointment two or three weeks out, without any regard to what they have to go through before that. There HAS to be a better way. At any rate, I appreciate your advice. If I make it through this week, I should finally get some answers and hopefully, some relief.
Just started my blog and came across yours. Thanks for posting this. I have been diagnosed with both Graves and Hashimotos autoimmune disorders of the thyroid and can sympathize. I am seeing a total of five specialists currently and unfortunately have discovered that it is a game of “hurry up and wait”. Many autoimmune patients experience this same thing. I recently spent two months waiting in life threatening circumstances for soemthing to be done, and was merely told to call 911 if I got any worse. REALLY PEOPLE???? How do we live like this? Anyway, its an experience that we will all continue to have throughout our adventure that will be ever so frustrating.
Thanks for posting and good luck to you!