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Right Eye Problem - Optic Neuritis? LHON?

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    Right Eye Problem - Optic Neuritis? LHON?

    Hi everyone,
    I'm hoping that maybe there will be someone who has know what I'm talking about and can somehow help me. I'm 31 year old male and I've lost central vision in my right eye over 3 months ago. I've got centrocecal scotoma and I can't read even one letter from the opthalmic board. My peripheral vision is OK. The loss of vision was quite acute, but month after the beginning the loss has been bigger and remains at this level up to today.

    I used to have 2 similar episodes in the past, 5 years ago and 1 year ago, which the first one lasted for 1 month, second one for 7 months and afterwards I had a spontaneous recovery and my vision went back to perfect. Anyway, the vision loss was less significant that it is now. During these episodes I observed that my vision got worse during excercises / heat.

    Here's a summary of various tests I've had in the last 3 months since the vision loss has started:

    Basic optical examination: OK, discs of both eyes are normal, everything looks normal
    Colors vision: OK, normal in general, but with the sick eye I see blue colors as more vivid
    Fluorescein Angiography: OK
    Optical Coherent Tomography (Aug, Sep, Oct, Nov): OK, same results even compared with 2016.
    Vision field test: Right eye - Outside normal limits, centrocecal scotoma; Left eye - OK
    Brain MRI: no demyelination, OK (results from 2016 and now)
    Eyes MRI (nerves and sockets): no demyelination, OK
    Spine MRI: no demyelination, OK
    Solu-Medrol i.v. for 5 days: no answer to treatment, no recovery at all
    Lime disease: negative
    Toxoplasma: negative
    Cerebrospinal fluid: oligoclonal bands type II found, overall parameteres OK
    Doppler USG of neck arteries: OK
    TSH, Cholesterol, glucose in blood, blood morphology, urine: OK
    Neurological examination: OK
    B12, Folic acid levels: OK
    EKG: OK
    Visual evoked potentials: right eye - bad, there's a delay; left eye - borderline/OK

    One doctor said that I should do genetic tests to exclude Leber's neuropathy. The other doctor said that in her opinion it is not Leber's neuropathy but something else related to the optic nerve or brain. It is like neurologists send me to opthomalogists and the other way round.

    I take a lot of supplements (Q10, Vit C, A, E, D3, K2, etc...) but no effect. I'm starting to lose hope of vision recovery. Is there anyone who can share some similar experiences or give me some advice?

    #2
    Hello fredzel and welcome

    Sorry, I have no experience or expertise to comment on your vision loss episodes.

    The oligoclonal bands Type 2, found in your cerebrospinal fluid, caught my attention. I would think that this result should be examined further.

    According to the chart in the following article, showing analysis of oligoclonal bands, there are several conditions (infectious, inflammatory, and neurodegenerative) in which oligoclonal bands Type 2 are found. What explanation did the doctor provide for the presence of these bands in your spinal fluid?

    http://onlinelibrary.wiley.com/doi/1...mcn.12033/full

    Also, what explanation is given for your abnormal VEP?

    Would you consider a second opinion from a different neurologist?

    Hopefully you will get some answers.

    Take Care
    PPMS for 22 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Thanks KoKo
      The explanation for my abnormal VEP is that it's something related to the optic nerve, although the result is not typical for MS.

      Thanks for the link. Oligoclonal bands are presented in a variety of diseases, including optic neuritis, but my case hasn't been examined further. They couldn't tell me why I have them.

      I'm going to go to another hospital on 11 Dec, so hopefully I'll get some information.

      Best

      Comment


        #4
        Originally posted by fredzel View Post
        Thanks KoKo
        The explanation for my abnormal VEP is that it's something related to the optic nerve, although the result is not typical for MS.

        Thanks for the link. Oligoclonal bands are presented in a variety of diseases, including optic neuritis, but my case hasn't been examined further. They couldn't tell me why I have them.

        I'm going to go to another hospital on 11 Dec, so hopefully I'll get some information.

        Best
        fredzel

        Good luck and let us know what you find out.

        Dec 11 will be here before you know it.

        Be sure to make a list of questions to take with you. It is so easy to forget our questions while we're at the doctor's, but then so easy to remember them in the car, on the way home.

        Wishing you the best!

        Take Care
        PPMS for 22 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

        Comment


          #5
          Sounds familiar

          Hi fredzel,
          I'm so sorry this is happening. It sounds a bit like what I've experienced--I haven't lost total central vision in my eyes, but certainly patches, in both eyes but my right is worse. Peripheral is fine, visual field confirms that yes, I don't see much in the middle. VEP really similar to yours. I tested negative for Lebnars (an easy test, tho, and one worth getting if you have kids, since it's genetic). They can get me to 20-100 in the right with correction, 20-70 in the left. I too keep being bounced between neuro and neuro-opthamologist, with little improvement.

          One thing my opthamologist hypothesized--since my optic nerves are equally atrophied, but just barely, not consistent with typical MS (and also I have no demylination in my brain, and only two small spots on my spine)--was an antibiotic regimen I was on 25 years ago, when I tested positive for TB while trying to become a candy-striper at age 12. Apparently there's an antibiotic no longer given (much) to Americans, that was really popular until they discovered it was making children go blind in developing countries. I was on it, but my eyes were able to "compensate" until I was also hit with MS, at which point the house of cards fell down. Interesting idea in any case--any chance you took an extended regimen in your (earlier) youth? That hypothesis hasn't led anywhere--the damage is done--but it was reassuring to get a possible answer since my tests weren't conclusive.

          Anyway, as far as advice, have you seen a Low-Vision specialist for accommodations? They can prescribe things like binocular lenses for (limited) day-time driving and also have access to far more sophisticated glasses options and software for computers. Again, not a cure, but maybe can help you see more with what you have. Good luck!



          Originally posted by fredzel View Post
          Hi everyone,
          I'm hoping that maybe there will be someone who has know what I'm talking about and can somehow help me. I'm 31 year old male and I've lost central vision in my right eye over 3 months ago. I've got centrocecal scotoma and I can't read even one letter from the opthalmic board. My peripheral vision is OK. The loss of vision was quite acute, but month after the beginning the loss has been bigger and remains at this level up to today.

          I used to have 2 similar episodes in the past, 5 years ago and 1 year ago, which the first one lasted for 1 month, second one for 7 months and afterwards I had a spontaneous recovery and my vision went back to perfect. Anyway, the vision loss was less significant that it is now. During these episodes I observed that my vision got worse during excercises / heat.

          Here's a summary of various tests I've had in the last 3 months since the vision loss has started:

          Basic optical examination: OK, discs of both eyes are normal, everything looks normal
          Colors vision: OK, normal in general, but with the sick eye I see blue colors as more vivid
          Fluorescein Angiography: OK
          Optical Coherent Tomography (Aug, Sep, Oct, Nov): OK, same results even compared with 2016.
          Vision field test: Right eye - Outside normal limits, centrocecal scotoma; Left eye - OK
          Brain MRI: no demyelination, OK (results from 2016 and now)
          Eyes MRI (nerves and sockets): no demyelination, OK
          Spine MRI: no demyelination, OK
          Solu-Medrol i.v. for 5 days: no answer to treatment, no recovery at all
          Lime disease: negative
          Toxoplasma: negative
          Cerebrospinal fluid: oligoclonal bands type II found, overall parameteres OK
          Doppler USG of neck arteries: OK
          TSH, Cholesterol, glucose in blood, blood morphology, urine: OK
          Neurological examination: OK
          B12, Folic acid levels: OK
          EKG: OK
          Visual evoked potentials: right eye - bad, there's a delay; left eye - borderline/OK

          One doctor said that I should do genetic tests to exclude Leber's neuropathy. The other doctor said that in her opinion it is not Leber's neuropathy but something else related to the optic nerve or brain. It is like neurologists send me to opthomalogists and the other way round.

          I take a lot of supplements (Q10, Vit C, A, E, D3, K2, etc...) but no effect. I'm starting to lose hope of vision recovery. Is there anyone who can share some similar experiences or give me some advice?

          Comment

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