Discussions By Condition: I cannot get a diagnosis.

Sudden onset blindness

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: KariMac
  • April 9, 2009
  • 05:29 PM

Ok I will try this again. About ten years ago, my husband lost his sight. His eyes just turned off. He has 20/1000 vision. Along with the blindness came nausea, weakness, migraine headaches, muscle aches, weight loss, and numbness in his left arm and leg. We went to doctors for over a year at least twice a week to try to figure out what was going on. They tested him for everything from metal toxicity to lebers. He under went every type of test I could imagine. Blood tests, visual tests, mri's the whole nine yards. When they did the MRI, they said the only thing that they could see was a sinus infection. The only diagnosis we ever got was optic neuropathy. In this 10 year span, things have progressively gotten worse. He is weaker, he has lost about 70 lbs. When he tries to eat most things make him sick to his stomach. He has such bad headaches, nothing seems to rid him of the pain. He has such bad body aches that he can't get out of bed. He will not go back to a doctor due to the fact that when we were going, the headaches got worse from the lights being shown into his eyes, and the lack of confidence in them knowing what they were doing. We have been to all types of specialists and no help. He has also developed chest pains, that are pretty strong for about 10 minutes then subside. When I take his blood pressure it is low. 99/52. I have researched for a long time and the only thing that I can come up with is Multiple Sclerosis, that even remotely matches his symptoms. Any ideas or help would be appreciated. I am sure I left out information that I had in my post last night that didn't show up. If I see anything that I forgot I will post it. Thanks

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4 Replies:

  • when he was 13 he lost his sight, and his blindness only lasted about a year, the doctors then said it was hysterical blindness. he regained his sight, and then about 22 years later lost it again, and this has been ten years now that he has been blind.
    KariMac 7 Replies Flag this Response
  • If you have copies of the report from the neuro-opthalmologist and can post specifically what the neurologist describes related to the optic neuropathy, I will try to see if I can determine what is taking place. Again, his symptoms are inconsistent with MS. Also, I'd like to inquire as to the nature of the hysterical blindness that was diagnosed at age 13 and what precipitating factors resulted in the condition. It would be extremely rare indeed for a conversion disorder like this to last a year in duration. Has he been evaluated for his GI problems and specifically where does his head hurt? Best regards, J Cottle, MD
    JCottleMD 580 Replies Flag this Response
  • Hi. 24 year old female, and going blind. Diagnosis Optic Neuropathy, unknown know cause. Oringinal loss of vision during pregnancy with son at age 19. Since then I have seen every eye doctor... No one has a clue, as I get blinder in the effected eye. Switched jobs last year and lost my medical insurance, unaware that my new place of employment only offered Individual insurance and not group...Didn't find that out till after. So that leaves me to today...partial blind, 24 years old and scare as ***l that I may wake up tomorrow completely blind. Can you help please? Resources that could help fund the treatment I so badly need. I feel helpless. I can't afford insurance, as I am now a single parent....I just don't know where to go from here? Do I just continue to go blind or go rate up thousands of medical bills at the county hospital that will haunt me for centuries to come. I have just about given up on the eye...It's accepting that I am going blind that is so hard, I am very scared to open my eye each day for fear of nothing being there. Help! :(
    sandiwhitlow 1 Replies Flag this Response
  • Okay, I need to get a more detailed history of what type of tests and therapy have been performed in order to determine whether the possibility exists that this could be autoimmune optic neuropathy. I also need to know whether any change at all has occured in the unaffected eye. Tests that should be performed here are a punch biopsy of non-sun exposed skin, typically on the buttock, for analysis. They need to perform a hematoxylin-eosin–stain to look for mononuclear perivascular infiltrate within the dermis with direct immunofluorescent staining to determine whether it is positive for IgM and C3 within the superficial papillary dermis and dermoepidermal junction which would point more conclusively toward an autoimmune complex, specifically related to the optic neuritis. If you've not previously undergone steroid treatment, 3 days with intravenous methylprednisolone sodium succinate (1 g/d) followed by an 11-day course of oral prednisone (1 mg/kg per day) would be a standard approach to determine whether any improvement in visual acuity and reduction in optic edema is observed. If the vision in the other eye has remained entirely unaffected, then autoimmune optic neuritis becomes far less likely the cause, but nevertheless must be ruled out through clinical analysis. You can also relax somewhat regarding your fears about total blindness. The problem here is more insidious than acute and the risk that you will wake up with sudden onset total blindness is quite remote. Find out from your doctors whether the above-mentioned tests have been performed and tell me whether you've undergone any type of treatment similar to that which I've described. Best regards, J Cottle, MD
    JCottleMD 580 Replies Flag this Response
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