GCA Eye symptoms

[Asbeck]

In the waiting room of the local eye hospital (US) I encountered someone (else) who had GCA. She lost the vision in the upper half of the left eye. I asked her about her symptoms and she doesn't really remember anything which alarmed her. She described that the vision was "shaking." She started with PMR, was tapering and was hit with the partial blindness. I have had what I describe as shaking "flashes" of arched black and white variegated tiny fragments. Sometimes they are pastel and black. But there is always "shaking." When I increase prednisone, (or before I was diagnosed when I took prednisone), after about 3 days these episodes stopped. The doctors wonder if my symptom is one of a migraine headache but without the migraine. However, they up the prednisone, none the less. So be careful. I'm wondering if this is also a dangerous symptom along with very temporary loss of vision, or large black spots, or a "curtain" descending down or across the eye. No question here. Just a caution.

[mickt]

Ive gca pmr any visual symptoms ,as you've had ,mine amourosis fugax double vis ,cloudy mosaic should be treat as a threat to your eyesight.High doses of metyl pred in iv I had in hospital 5 nts laast yr.You should see a rheumatologist and opthamologist.I realise you in usa and cost may be a factor.But hang the cost your eyesight more important.

[Asbeck in reply to mickt]

Thank you mict. I didn't know the words: "cloudy mosaic." Thanks for the description. I guess that this is what I should have been describing. Those words fit perfectly. And yes I was really stupid. I went for 7 months with symptoms, thinking that I had a sinus infection and the EN&T doctor missed it. Luckily he did give me "bursts" of steroids relatively frequently. I had a slight double vision before all this started and now wear prisms all the time. I have a 4th nerve palsy in the right eye causing up and down cross-eyed-ness. I'm very near sighted from birth and couldn't figure my eyes out. But I knew that I didn't want to drive and had an accident when I tried an expressway trek. My vision got worse in my left eye (the disease was in my left temporal artery). But it is correctable. And now I have a group of wonderful doctors. After being diagnosed and treated, when my eyes flared on a Saturday, I had a new doctor, a neuro ophthalmologist, by Tuesday. There is a world class eye hospital here, Bascom Palmer. I now go there and can access the emergency room rapidly (so long as I get on the ball and DO IT). I also have a Rheumatologist, even a sometimes hematologist and endochronologist. We can get great help in the US, (thank God I've had wonderful insurance) but it's sort of spotty and when you're sick it seems difficult to get the correct help. But now I have it. Thank you again. It's people like you who have given me hope and helped me a great deal. You guys are why I got a neuro ophthalmologist and endocrinologist (for bone loss & prednisone diabetes). I wouldn't have had a clue.

[mickt in reply to Asbeck]

Hi Asbeck it sounds like you are being well looked after ,after initial visits to medics.Im glad ive been some help to you .

good health and luck!

[Asbeck in reply to mickt]

Thanks mickt. I hope that you feel better soon. I feel for you. You are suffering from many things. God speed you to your recovery.

[Asbeck]

Without this site I would be lost. Without your post I would have ignored the "cloudy Mosaic" as an unrelated symptom. "Some help" does not say it. You might have saved my sight. When I taper it's the "cloudy mosaic" which has surfaced as a symptom. Thank you.

[mickt]

Im glad to have been of some assistance to you Asbeck.Rhuematologist will try and find a steroid sparing drug to suit you so he can wean you off pred.