Visual Problems, looking for answers

[LaurelQ]

Hi there, I am 39 years old and suffer from SLE.  I have had visual problems for more than a year now in the the form of snow/static, the sensation of light in my vision (like if you stared at a bright light and then looked around) a black floater in my right eye, sensitivity to bright light, decreased night vision.  I have failed two VF tests, and seen a retinal specialist who states that I have retinitis pigmentosa.  Some of the symptoms fit, but not all.  The sensitivity to light and bright colors is quite bothersome.  Especially snow glare.  Is there something else that they could have missed?  I had an MRI which revealed an increased signal intensity in the periventricular white matter of the right posterior temporoparietal lobe.  The findings were felt to be non-specific in appearance and were thought to possibly represent an area of gliosis or infarction or an area of demyelination.  I'm hoping you can help me with this!

[LaurelQ]

On another note, how often (if at all) should they monitor that MRI?

[LaurelQ]

Hi there,

Well the angiogram was normal.....as I expected.  He wasn't going to commit to the neuro referral "yet" he said.  He believes its RP.  On another note I failed the two visual fields tests done that day.  I'm very frustrated, because I can see fine.  In the VF tests I can't distinguish between the flashing lights and the flashes I have all the time.  I've told them that MANY times, but they insist that is the proper test.  I have an appointment with internal medicine coming up...maybe I'll try from that way to get a referral.

[promethiusII]

i should probably keep out of it, but if it were me, i'd sure want to squeeze all possiblle info out of an OCT scan before subitting to a flourscein angiogram - unless they strongly suspect leaking vessels in your case.

[John C Hagan III, MD, FACS, FAAO]

good luck
JCH MD

[LaurelQ]

Thanks for the input, I'll ask to be referred to a neuroophthalmologist.  I can't hurt.......I don't know about the MS.....it's been in the back of my mind for awhile.  They know I have SLE, because I have developed antiphospolipid syndrome as one of the problems.  I guess I just didn't want to think about having MS AND Lupus, but Retinitis pigmentosa isn't a much better option.  I'm having a flurocene angiogram on Thursday......keep you posted.

[John C Hagan III, MD, FACS, FAAO]

I agree with seeing a neuroophthalmologist.
Find one near you at www.aao.org
JCH MD

[promethiusII]

i'm just a consumer like you, but also with AI diseases. do you also have MS? that can also effect eyes such as optic nerve which would cause visual field test "failure' as well as demylination on brain MRI. (I forget what CNS stuff lupus causes)I think youre supposed to see a neuro-ophomolagist if you haven't yet  seen one; theyll concentrate on things the retinal specialist wont that  could be causing some of your vision trouble.