Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group finally a referral to a hematologist!

A humidifier helps a lot as does a damp wash cloth over your eyes at bedtime. I have been told to hold it in place with plastic wrap. I have done this and it does help. I just have to shed it after a while. I use eye drops all through the day and night. I keep them in the kitchen, in my purse, in my nightstand and sometimes just in my pocket to have them handy. I wear Fitovers (which you can order online) which are great sunglasses to wear over regular glasses (or alone) which keep all wind and sun out of your eyes. The wind will dry them out so quickly. I have Sjogren's and also Blepharospasms and I fight my eyes constantly. I will say that the Spasms are 100% better after my surgeries and wearing the FL-41 lens. Just wanted to correct myself about fighting the BEB. Now just the Sjogren's.

Blessings.
Possi

Optho said it was not dry eyes.... I explained that once upon a time I DID have dry eyes, and that's why my GP prescribed salagen for me (oral, and yep, works very well) - and I use it when needed. I haven't needed it in a couple of months though, and he decided on exam that my eyes were fine on exam.

I wouldn't be able to survive winter without a really big ultrasonic humidifier - you'd shrivel up to nothing in a prairie winter here. I keep the mist right over my head when I sleep too - moreso for my skin than my eyes. It's like the amazon rain forest in there when I get up in the morning. lol

He didn't see a need for Schirmer's test - my eyes weren't dry at the time at all. Really. I've had dry eyes my whole life, and it's actually really good right now.
Yes, he did a slit lamp test, while my eyes were dilated (and they still are - still can hardly see the keyboard as I type lol) - it was all normal. It was just my field of vision and acuity was shot on my right side. But the physical exam of my eyes was totally normal. I think perhaps my right eye dilated more than my left - and that was what caused my sight tests to be off on my right eye?

lol Louise - I felt like a weirdo sitting in the doc's offices today with my darkest sunglasses on. And then the dilating drops did not help matters, that's for sure. Even with sunglasses, I had to close my eyes, and Glen had to lead me back home.

Maybe that's what Bono's problem is - I've always wondered why the guy can never take his sunnies off!

You'd think crying my eyes out would help hey? lol Nope. Not even that, this time.

I'm sure it'll get better with time.

Thanks Possi, I was wondering how your eyes were doing after the surgeries. That's great that they were helpful and your spasm are in check!

I will try the damp washcloth idea. Sometimes I put a gel icepack over my eyes, but I was using a dry cloth to wrap it. A damp cloth instead would be a great idea, thanks for that.

I've also seen fitovers, and will probably have to get some of those - another good idea. It would be great to be able to walk in the daylight again - it's just too cold here lately to walk in the evenings.

I'm sure I'll get there. Usually just takes time. Thank goodness for this place, and for the people like you! Hugs!

thats just a cr**tacular doc.
Send him down under, we'll loose him in the outback for ya. ggrrrrr...

Hope you feel better soon

lol Thanks Ansh. If Glen doesn't lose him in the arctic tundra for me, I'll send him your way.

Yeah, the KA Posse will bust him out!

I'm glad it isn't iritis, but hate that they don't know what is going on with your peepers... and not being able to see after those dilation drops sucks on a good day, let alone when the world has gone all white and reflecty. (insert image of smilie shaking a fist and yelling at the sky) White computer screen won't help either. Another thing for the neurologist to figure out...? That appointment can't come soon enough, eh? Have you contacted the clinic to put your name forward for any cancelled appointments? Have the steriod drops helped at all, or is it just the morphine getting you through?

Sorry, barage of questions. I just wish I could do something for you. Other than send a whole heap o' hugs your way...

Kurumi,
Yep, I was pretty happy it wasn't anything obvious too. Thought for sure it was going to be iritis since I'm in a major flare from too much starch! whoops.

Glen would agree with you - he thinks the neurologist should take over from here. But I don't see him until Jan 18.

I didn't do the steroid drops - was instructed to use them if my eyes were red or the pain got worse. It's still around the same though. I've doubled my morphine, and it kind of takes the edge off, but that's it.

Tomorrow's another bright, sunny day, so I sure hope the dilating drops have worn off by then! I am never doing this dilating drop exam when I am light sensitive ever again!!!!
back atcha!

I'd think it best to get Glen to wait in the dark outside the clinic - bind, gag and bag the scoundrel and ship him to Ansh!

We have red dirt here in the outback - red on the glare of the tundra snow would be easy to spot and trace to the scene of the crime...