Hey (((((((((Karen)))))))) :hugbetter:
I’m really sorry to hear you’ve been ill the past few days…
Yep thought you might have some trouble with glare; that was one of the things that bugged me quite a bit on the laptop etc too. There is a webpage (don’t mind it’s content, it’s pretty irrelevant to anything really, just a charity site) I know of that has contrast adjustments on it so you can check out whether a black background to orange or white letters is better for your eyes without actually changing any of the settings on your computer yet. The webpage is:
When you go to that page, on the left hand side you’ll see different symbols/signs (a minus sign, a plus sign, a T in a normal frame and then below it a yellow T in a black frame etc). Press the button that has the yellow T in the black frame and the page will re-load with a different contrast. Look it over for a little while. Do you find that contrast better (i.e. less tiring etc) for your eyes??? If so you can change the settings on your computer to that (feel free to pm me if you don’t know how; it’s pretty simple in windows!) and that might help a little bit…
Re the rheumy vs neurologist dance you seem to be going through at the moment; I do realize optic neuritis by itself (and in lupus) is a neurological problem and that maybe neuros know a bit more about it than rheumies do, but rheumies on the whole know a lot more about lupus symptoms and lupus treatments than neuros do (at least that’s what I’ve found so far). Now I have two neurologists for all the lupus and aps neurological stuff I’ve had as well as an eye doctor and a kidney doctor but they all, without exception, “answer” to the rheumy who is always in charge of treatment and all medical decisions. If I go to the neurologist and he thinks I’ve got something lupus or aps related he picks up the phone and calls the rheumy and they discuss it, the same goes for the kidneys and the eyes. I see it as a kind of decision making tree of sorts, with the rheumatologist at the top. This helps keep symptoms/discussions of treatment/comments etc from being lost from doc to doc….
Now of course your rheumy does not treat neurological problems that don’t stem from rheumatologic diseases but do you mean to say that he won’t treat your lupus-related neurological problems?? It is truly not the norm for rheumatologists to not treat lupus related optic neuritis themselves and to leave the treatment completely in the hands of a neurologist who may or may not have much experience with lupus cns stuff and lupus treatment, as treatment for optic neuritis has to do solely with getting one's lupus under control more often than not. Have you been going to your rheumy for a long time? Is he the one that put you on imuran? Imuran is a med that is used to try and get one's lupus under control and to thus stop the recurrence of any lupus related eye trouble too....
Yes, the eye doctor wouldn’t know much about lupus related optic neuritis treatments if anything. That is exactly why cooperation and discussion between one’s docs is vital. The eye doc might know what the matter is with your eyes but might not know how to treat it, the neurologist might be able to run tests etc to tell you if the optic nerves are inflamed and/or damaged etc but the rheumatologist is the one who will guide everyone (yourself included) on treatment options and prognosis.
Iron infusion??? For the anemia??? Why not iron pills??? Did they not help enough??? Does the infusion help??
I'm ok; thank you for asking! My eyes have been stable for a while now and whilst I've had my ups and downs at times with other lupus and aps stuff things seem quiet on all fronts at the moment so something must be working! :bigsmile:
Keeping my fingers, eyes and toes crossed for you and hope you feel better very very soon… :grouphug2::grhug::hug: :fingers: