Saw my neuro this week. She doesn’t think I have MS. Just because certain diagnostic tests don’t show the expected results, my flares have been documented. I had one flare that lasted 6 months. I was treated with the standard MS flare meds by IV for three days, every month for three months. If that wasn’t MS, tell me what is, doc.
Yet she continues to treat me, because my diagnosis came from UCLA, which has a specialized MS program. Still she has me coming in every six months. When she asks me about new symptoms, she dismisses them as not MS-related, and therefore not her problem. I guess if I’m not blind or in a wheelchair, I’m not worth her time. She will be replaced. I can see someone else in that office. Why did it take three days for me to realize this? Why didn’t I say something to the Doc?
I’ve been having an eye problem where it felt like my eyelids were sticking to my eye balls. This has been going on for a few months, and wasn’t getting better, but not a real big deal, eye drops seem to work. So brought it up to my GP. So she looked a little more closely at my eyes, and had me read the eye chart. I’m really shocked. If you measure by number of lines of the chart, my vision has consistently been only one line apart; my right eye is a tad better than the left, which has an astigmatism. This time it’s 4 lines! I can only read the second line of print with my left eye. I’m a little concerned and say as much to my GP and she gets me a rush referral to the Ophthalmologist. I really like her. I want her for my new GP, my old one is moving.
I couldn’t get into the Optho until mid-March, so they referred me to another office. I call and get an appointment for the next morning! Wow, cool. The doc examines my eyes, pretty much a routine exam, I read the eye chart, he dilated my eyes. He seems thorough. He tells me that I have an issue with glands in my eyelids not working. I never knew there was anything except lashes on my lids. These glands are supposed to secrete oils necessary to keeping eyes naturally moist. He gives me a script for Restasis, and gives me a list of three more eyedrops I’m to use everyday for the rest of my life. Four different types of drops, basically I’m to put drops in my eyes about every two hours. Ok, it’s inconvenient, but not really something I can’t adapt to.
That’s when I ask him, “What about the sudden decrease in the visual acuity in my left eye?” He shrugs, looks at my chart and sees I got new a prescription in my glasses Nov. 2015, so I should wait till this November, when my insurance OK’s new glasses. I’m not really thrilled, but I figure he’s the doc, I trust that it’s not a big deal. I go home.
Then yesterday, I’m updating my calendar and find the doctor’s card, which I just grabbed and put it in my pocket as I left. I only read his name, not his title. This time I read the title. He’s an optometrist. I had a referral specifically for the ophthalmologist. When I made the appointment, I assumed since they knew I couldn’t see the ophthalmologist in my office until March, that I would be seeing theirs. I could have seen our optometrist, who I’ve been to before.
It’s been two weeks using all the eyedrops and my vision in that eye seems to be getting worse. My vision seems blurry, colors seem to merge and shift? Can’t describe it. Suddenly I can’t properly identify a certain size or shaped or colored object until I am two feet away. This is not normal for me. I’m worried this is not the dry eye issue, this might be the Fuchs Dystrophy I was told I had 20 years ago. It’s a slowly progressing problem in the cornea. When it gets bad enough the only option is transplant, but that’s still years away for me. I hope. (Hmmm. How likely is it that Medicare will pay for that by the time I need it?)
Then I talk to my brother, who I haven’t seen in 25 years and he mentions one of my sisters. Says shes going blind. Now I’m worried again. I haven’t spoken to A in 25 years either, but I’m going to have to talk to her. I think since my referral is good for two visits, I’ll just keep the appointment in March with the ophthalmologist.
What the hell is wrong with me that I don’t notice these things? I used to be so thorough. But I never asked the office what type of doctor I was seeing, something I once would have made sure of. I used to speak up for myself, and I honestly don’t know when that disappeared.