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tbird
02-19-2008, 03:25 PM
Can anyone PLEASE tell me some visual disturbances and sysmptoms that you have or have had. Preferrably in the beginning stages. I am so scared right now and I need someone to talk to. I am not yet diagnosed...

I have these shadows that follow object/people/anything that crosses my field of vision. Kinda like after the object has moved in front of me it has an after image following it. Like a negative to a film or something.. does that make any sense??! I just can't really describe it.. then I have shaky vision, halos around everything, light flashes, my eyes hurt, and see weird things.

So I have been to an Opthamologist and my eyes are fine then I went to the NeuroOpthamologist today, NOT impressed one dang bit. It was like he was just writing everything off to migraines...or me being pregnant. The most in depth he got was with a flashlight. I am so upset, there are no words for the way I am feeling right now!!! He said my optic nerve looks fine and all my scans are good. The eye problems that I was telling him about, he just either had an explanation for it or it was normal...How in H*** can what I am seeing be normal. He says you can have migraine auras that linger all day, my neuro says otherwise, that is why I was sent to him, the NO! Please someone tell me what to do!
PLEASE
So so confused and feel mocked and not taken seriously... :(
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sits_inthe_corner
02-19-2008, 04:22 PM
I'm in the process of being diagnosed as well. There are many here who have been dealing with lupus and the systems alot longer. I am not having vision issues myself, but my sister who has lupus has. She described her vision episodes like walking past a very tall picket fence. The constant visual flipping of the boards. She is in remission now and has been for quite a while.

Lupus affects everyone differently. One thing I can tell you is we all have had the same experiance with having to keep pushing to get the answers and the treatments we need. Dont give up...your next step should be to go back to your family doctor and tell them what happened, and that you are not satified and need help. Do you go to a rheumatologist, or a specialist who is checking into the lupus? If so, take your complaint about needing further investgation to both your family doctor and the rheumatologist. If you are not being follow by a specialist such as a rheumatologist, insist that your family doctor refer you on.

I had to tell my family doctor that I was going to start smoking again out of pure frustration....she refered me to a rheumatologist.

It's a looooong path, it takes time to get sorted out. Just keep pushing and take very good care of yourself. Stress can agrivate lupus. (which is really ironic) Cause trying to get treated for lupus is VERY stressful.

Soft hugs...I'm sure others will respond soon.

rob
02-19-2008, 06:17 PM
I mostly get pain behind my eye, usually only in one eye, and always when I have a flare. Optic Neuritis, inflammation of the optic nerve is what the Dr. said it was. Supposedly temporary with little lasting effect, it's still painful and disconcerting to say the least. During these times I also get shadows in my peripheral vision, and momentary of flashes of light, like sparks. So far, it has only been temporary as my Opthamologist has said.

Numpty
02-20-2008, 02:40 PM
Am still in the diagnosis process too. With my eyes I get a stinging sensation and although my vision isn't always affected my actual eyes feel blurred (that makes no sense at all I know, I can't explain it any other way ~l~). When I get my horrible hive like facial rash my left eye becomes bloodshot to the point that there's no white left there, just red. Very strange!

I hope you find someone to take you seriously and that you get your sight sorted out ~sends hugs~ Keep us updated as to how you're getting on and if you find out the cause!