Going Blind - Anyone else had problems with their optic nerve?

  Well, my week of denial is over so I now have to face the inevitable.  Saw the optomotrist last week and was told that half my left eye went completely blind and half my right eye was almost blind.  Says it is progressive and not expect it to come back.  Also said he thinks it is the optic nerve.  I need to go to a opthoneurologist for the cause of my blindness.  I wasn't too sure what to make about the doctor's comment that he only seen this problem with MS.  I explained I had lupus, and he said maybe I had lupus and MS.  Well, I do have the CNS lupus so I guess that is similar to having both.  I never heard of having MS and lupus.  I also never heard of going blind from lupus. 

Is sclerosis of the optic nerve normal for lupus?  I also have sclerosis of the mitral valve.  Sclerosis here and sclerosis there.  It is getting to be a common theme these days. 

Has anyone had any relative experience with this or with going blind?  I don't know anyone blind so I am clueless when it comes to this health aspect.

As always, any help/thoughts are appreciated.  Thanks - Kristin

Thanks Butterflake - Afraid it is permanent, been losing vision for 2 years now and progressing - none of it has come back yet unfortunately. Still, I hope they can stop the progression somehow. I won't ever give up hope, just may need to readjust as usual. Need all the positives I can get out of life and appreciate your kind energy - Hugs - Kristin

So sorry for yourf news it must be devastating.

On another note to any who read this post.  I was told it is very important to have regular check ups to make sure any autoammune disease is not affecting our vision.  Inflamation can cause many side affects in the body.

my thoughts and prayers go out to you

Sharon

My daughter Sarah just had a check up last week and everthing is good.

Kristin--
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.

Thanks everyone for your kind words and assistance. I was checked for every neuro disease imaginable including MS and MG for years. Couldn't find anything until it started on the organs. After pericarditis, blood clots, dementia, hypothyroid (Hashimotos), etc. set in at the same time, they finally tested me for Lupus, I had a couple of positive results and I was diagnosed with it. Lupus also runs in the family. I am wondering if the mild scleroderma symptoms I had a couple of years ago aren't connected to the recent sclerosis of the mitral valve and the blindness. Whatever it is, it is having a field day. Love you all - Kristin

Kristen, I can't offer much help for you, I just wanted to let you know that I'm really sorry you are going through this. I can't imagine what you must be going through. You are in my thoughts. Lots of ((((Hugs)))))

Hi, Kristin. I'm SO sorry you're dealing with these vision problems. I had my third nerve damaged in a bad car wreck in 1994, so the vision I do still have in my left eye is so bad its' not even measurable. I know there is a lot of technology out there for eyes today. Please don't risk what you do have left and definitely go for that second opinion. Your eye-sight is SO valuable! Good luck,