Re: still no dx

Posted By Diane  on July 01, 1999 at 18:46:12
  I've written to you several times and am grateful for your help but now I'm really getting frustrated. I'm the 55 yr old woman losing sight in R eye...foggy vision, Amsler grid distorted, have been to optho, neuro and neuro-optho...I thought it was a cataract, they say it's something else...optic neuritis, disc at risk, afferent pupillary defect, pale disc, something about the borders...have had 1 brain MRI w/o contrast, 1 orbit w/contrast and another orbit with fat sat and contrast and all the cuts; evoke tests, florescein angio, peripheral vision. Everything is normal except my vision keeps deteriorating, especially peripheral and there was a bit of blood from hemmhorage in retina. No one knows what's wrong  but they thought it was a meningioma...but today the enhanced MRI came back totally normal. Now I'm getting angry. What could be causing my vision in R eye to keep getting foggier? I do have bright light wash over my eye when I close it sometimes as if someone took a photo with a flash. I rarely have headaches and no pain in eye, just extreme unbearable photophobia.
  I'm wondering if I should just give up and say the heck with it. I'm getting depressed I guess. Irritated, angry, tired. My doctors are very nice and well-trained and I feel they're doing all they can...but how long can this go on? Thank you for any suggestions you can give me.

[HFHS M.D.-NI]

Posted By HFHS MD - NI on July 01, 1999 at 18:53:30
Without examining you we cannot make a diagnosis.  You have been to many doctors and have had multiple tests done.  You need to keep following up with those doctors.  If they cannot answer your questions, ask to be referred to the closest academic medical center with an ophthalmology department for further evaluation.
Sorry we cannot help you further.

[Diane__0__0]

Posted By Diane on July 01, 1999 at 21:13:35
  Thanks for responding to my questions so fast. I was referred to the University Eye Institute my my neuro and that's where I had 5 hours of thorough testing with a neuro-optho plus interns and another neuro-optho because they were interested in my case. They're the one who thought it was a meningioma pressing against my optic nerve and so had another eye orbit MRI with fat sat and contrast. The radiologist read it as normal. So now where do I go from here?

[hfhs md ke]

Posted By hfhs md ke on July 01, 1999 at 21:48:47
at this point all i could recommend you do i possibly ask for a second opinion, perhaps see anothe rneuro-ophthalmologist at a different academic center-  i am very sorry for your difficulties   good luck        if u r in michigan we would be happy to see you at the henry ford medical center  800-363-7575

[Diane__0__0]

Posted By Diane on July 01, 1999 at 23:14:11
  I sure wish I was in your area and able to come to your clinic! I know you wish you could give us instant answers to our questions and I know my doctors do, too. It's really sad, isn't it? There are so many people out there longing for answers and cures and it must be just as frustrating for you all. Thank you and bless you for your compassion.










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