Technically, it is Thursday morning. I saw the NO on Tuesday morning, armed with questions and a serious approach.
Despite the infusions and taking 60 mg per day, I was still bothered by pressure on my temples and jaw joints, as well as intermittent numbness on the left side of my face and sometimes my legs below the knees. My headaches were light, and Tylenol cured them. My vision in my right eye remains hooded, but most notable to me is that dim areas, like a room with a few nightlights, are DARK now. I feel the 'fuzzy' vision is due to the pred. Had I mentioned he had increased my Gabapentin to 1200 per day two weeks earlier? I have a blind spot for sure, but some of the peripheral may return as the swelling continues to go down.
If my vision never improved a bit...I would be thankful for what I have. I know I'll adjust, but I am serious about NOT losing anymore. Though fuzzy, I could read some of the eye chart with my distance glasses. When he shined the light in my eye, it wasn't as bright as usual, and he did not peer to the left or right, practically crawling around my nose as is customary~!! My sense was that the pupil did not react as it usually did in the past. That may change.
I asked him if I could see him more often since he had 'the window into my eye' with his knowledge and equipment and directly requested that he examine my eye more than every three months...in light of what had happened. He said he would see me every two weeks. That was a 'big ask' since I wanted him to be primary over the rheumatologist. Though he never prescribes the prednisone and confers with the rheumy....he did step back and flatly say, this never would have happened if you had remained on prednisone. You are an individual who will be prednisone-reliant to retain your sight. Big statement in the American Medical community. It just isn't worth the risk to me at almost 84...I don't need to be a zero-hero, I want to see. When I can taper down, I think 7-10 mg would keep me safe. We'll see...my symptoms will decide.
The optic nerve and disc swelling in my good eye had gone down but wasn't back to normal despite the IV therapy and the 60 mgs. So, he ordered an MRI ASAP, which I had today late afternoon. Though the optic nerve showed ischemia, he wanted to check and ensure there was no 'stroke' activity of the brain. I'd be surprised if anything else showed up.
I'm so lucky I can pop those 60 mgs in the am..... I feel normal for a bit, move to shaking leaf, and then welcome Sponge-head, coming down the mountain. I have no stomach troubles, and I am positioned in life where I need only do what I want. That's possible because my husband has been so helpful, so great. My brain gets very active with what I'm going to do tomorrow...but I haven't written or painted. I've been puttering around the house and watering flowers outside. Confession..most of my time is spent listening to books.
Whew...a long post; I know you care and all of you sure are important to me. My head is in a good place mainly because I've accepted that uncertainty is just part of the package. Accepting that and not being anxious about the 'what-ifs' had really helped me relax, knowing sight is primary and I'll won't personally be doing anything to jeopardize that. All of you make me SO DANG brave.💞💞💞
I have one question...I have never urinated so darn much in my life, never! Is that all the pred?
Update and ESR elevated
blurry eyes
Eye bleed and blurred vision
