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Thread: Deteriorating vision ?

  1. #21
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    Quote Originally Posted by Alysia View Post
    Thanks for the info about cataract, drz and Jana. Mine is still young for a surgery. The dr. Said that it doesnt explain the big change in my vision.

    Gab, I did take more pred lately, couple of times in the last months. How is the pred affecting your vision ? I doubt its the pred. It didn't affect my vision at the wg onset when I was on 60mg for 5 months. And the vision is not better when I am back to 5mg.

    Sister, I will see a neurologist in 2 months so I will ask for brain CT or MRI. Will it be the right test ?
    As for my GI system, I have wg involvement in my colon. For years. But now it looks like something else is going on. No IBS but IBD, according to calprotectin test. Thank you.

    It it was an MRI that was able to isolate the optic nerve.

    Hope you get answers from your docs Alyssa.

  2. #22
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    Unfortunately, no. In reply to did i get my vision back to normal.

  3. #23
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    I saw the nutrition specialist today. Totally amazing dr. She said that only lack of Vitamin A can hurt the vision and that first it hurts the night vision. I dont have lack in vitamin A. I get it from eating eggs.
    She gave me a formula of medical nutrition for IBD containing all the vitamins which I dont get from my poor nutrition. Will see how it works. This one: https://www.nestlehealthscience.com/brands/modulen
    Still, I dont see well. Some hours are worse then others. Next dr. Will be a neurologist..
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  4. #24
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    That seems like a supplement powder of some sort. I am a bit wary of those, but it's probably me being silly. I have never actually tried any.
    Check that the ingredients don't interfere with anything else that you are taking, and my fingers will be crossed for you, that it works wonders and you can finally get some well deserved relief.

    As for the eyesight, I was so hoping that they found an answer for you
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  5. #25
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    Only lack of vitamin A can affect vision doesn't sound right to me. It might be common but it is NOT the only thing that can affect vision. I had serious vision problems for quite some time that were determined to be cerebellum involvement. There was nothing to do but continue to treat the wg. In about a year my vision returned to normal. I'm not saying this is your situation but merely pointing out that vitamin A isn't the only cause (sounds like a quack statement to me) especially for a wg patient on lots of meds. There are lots of things that can go wrong with vision. I spent a lot of time with eye doctors before getting better. I hope yours improves the way mine did.
    Last edited by me2; 01-19-2017 at 06:19 PM.

  6. #26
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    Quote Originally Posted by me2 View Post
    Only lack of vitamin A can affect vision doesn't sound right to me. It might be common but it is NOT the only thing that can affect vision. I had serious vision problems for quite some time that were determined to be cerebellum involvement. There was nothing to do but continue to treat the wg. In about a year my vision returned to normal. I'm not saying this is your situation but merely pointing out that vitamin A isn't the only cause (sounds like a quack statement to me) especially for a wg patient on lots of meds. There are lots of things that can go wrong with vision. I spent a lot of time with eye doctors before getting better. I hope yours improves the way mine did.
    Thanks for the info. The dr. Was referring only to the issue of lack of nutrition. Not other causes to vision problems.
    I still have a weired vision. Some hours it is worse. Some hours better. I will have to buy new lens to my glasses anyway. But it is beyond that. No idea what number I will need as it seems to be changing over the day...
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  7. #27
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    It looks like you are seeing a neurologist next. I hope you have an eye doctor high on your list to see too. In my case it was actually the work of the eye doc that helped diagnose the problem in my brain. They found the anomoly in a test that uses prisms. They had never seen someone with my condition.
    My eyes were actually in perfect working order it was the brain that was causing my visual problems. I hope you get yours sorted out soon. I know how disturbing it is to have changing vision problems.

  8. #28
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    Yes. I will see a neurologist but only on March. Its a long waiting list. Thank you !
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  9. #29
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    Quote Originally Posted by Alysia View Post
    Yes. I will see a neurologist but only on March. Its a long waiting list. Thank you !
    I hope the eye dr is a good one and can easily fix the problem.


    Sent from my iPhone using Tapatalk
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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