I'm so so so sorry this is happening to you. I hate to say this, but could there be any way they misdiagnosed you and you have MS and not lupus? They are kind of similar in a way, both being autoimmune diseases and usually MS affects the eyes first but not always. Have you been checked for all the other neuro diseases like Myasthenia gravis and the rest, whatever they all are? My eyesight was always so bad as a kid that iin a way I was blind most of my life. I fear my vision is failing but tell myself it is just a result of my eye surgery, I had vision correction surgery. My mother is blind in one eye and can't see out of the other, really! She has been blind in one eye since she was a young woman, they said the shape of the eye caused it. Then she has less than perfect vision in the other eye. I will check out the web and see what I can find. They are doing some pretty impressive things with new medicines for MS so perhaps by diagnosing and treating this new condition, whatever it is, they can slow the progression of the eye loss. My sister has some kind of eye disease and she will eventually be blind but she will be like 70 so that's not so so bad, I mean its bad at any age, but at 70 you kind of expect to have some problems. I think she got it when she was doing veterinary work from the animals. She has tunnel vision now, which is what I have sort of. I am so sorry Kristin and I'm sending you lots of (((hugs))) and good wishes that you will get this diagnosed and treated and they can slow or stop this in its tracks. Also, you should make sure that you get two good opinions from good eye docs because maybe there is a chance that the damage was misinterpreted, and you want be sure that they diagnose it right. I just have been having a hard time trusting anyone lately. I'm so so sorry to learn of this, you did not need this and I will keep you in my thoughts and prayers. I've missed you, I haven't been out a whole lot due to problems with my son and my own state of mind. You did not deserve this Kristin and I wish I could make it go away. I'm so sorry.
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments