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Thread: eyes involvement ?

  1. #11
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    Alysia,

    I have had eye involvement, red eyes,swelling and blurred vision. I had to have cataract surgery on rt eye in Feb, because of being on preds for so long. I did go to an eye surgeon/specialist but now I'm having problems with that same eye and the lens is not healing properly. I suggest that you go to a dr who knows about vasculitis, I thought this one did but I'm beginning to wonder. I have had pain in the rt eye and both eyelids turned black and blue. I have been back several times and she says everything looks great. I go back to her tomorrow, we'll see what happens next. Good luck to you and please find a good vasculitis eye specialist.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    My eye problems seem to be different from most. I have dry eye syndrome so I use liquid tears all day, my membrane around the back of my eyes and under my eye lids gets destroyed. I must have seen 20 ophthalmologists before I found one the knew what he was doing. My body starts to produce a thick clear sticky liquid that come out of my eyes, ears, nose. I clear it all of the time with saline solution, if I don't watch it all of the time it will seal my eyes shut and then everything sticks to everything and I lose my sight. This is the fourth time it has happened but knowing what I know now I slow the whole procedure down so that they can replace the membrane before it does too much damage. I am just about to do this in the next few weeks but first they will check what else needs doing, I just got a hernia and need my ears redoing. they are great here because they will all try and operate in the same operating room so I only have to be put to sleep one. I am a very high risk patient. I'll keep you up dated. Barbara
    My blog: Animo

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    I too had Scleritis before I got diagnosed. The one only other suggestion I might add to the great comments above, is to watch out for any temporary loss-of-vision or "greying" in your field of vision. I had that in one eye, and I suspect it was the raging inflammation at-the-time affecting the optic nerve. That really spooked me since I feared permanent damage. Once the drugs started kicking in things were OK there again, but it is another of the symptoms I literally keep an eye out for (pun intended). I continue to use eye drops as part of my daily routine too.
    Good luck with it...
    Hal

  4. #14
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    Hi,
    thank you very much for all the advices and suport.
    one problem is that I coudn't find any doc who specialized in vasculitis. In all the country I founded only one in google who defined himself as specializing in AI diseases. I will ask my WG doc if there is any eye doc he knows who can help.
    since the beginning of my illness I saw so many docs (20-30. internal, pulmy, ENT, rhuemy) but only 2 or 3 of them ever saw any weggie but me.
    another problem: I read that there can be an eye disease a-symptomatic, except for red eye, and that this is hard to detect.
    Im hoping that the RTX I got a month ago, will help that too.
    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.

  5. #15
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    Alysia, I remember you said there was a room in your hospital that said Wegener over the door! I found that impressive. I would think that there would be doctors beyond that door who had treated at least several WG patients and would know what eye doctor would be able to handle your eye problems. I'd think in the whole population of Israel there must be a lot of eye doctors. I suppose you might have to travel a big to see the perfect person. Keep trying, and good luck! (Of course I know you already have been trying, and maybe it is more difficult than I think.)
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    Alysia, I remember you said there was a room in your hospital that said Wegener over the door! I found that impressive.
    Hi Anne, well that room was in my dream and this forum is the room. but off course Im going to search for the right eye doc. thanks !
    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. #17
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    funny, Im looking at the book Im reading now: "trust your eyes" of Linwood Barclay..
    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.

  8. #18
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    Quote Originally Posted by Alysia View Post
    Hi Anne, well that room was in my dream and this forum is the room. but off course Im going to search for the right eye doc. thanks !
    Oh, silly me! I must have been dreaming myself to have read it or remembered it that way. Best of luck in finding the eye doc that you need.
    Anne, dx'ed April 2011

  9. #19
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    Quote Originally Posted by Alysia View Post
    ...that room was in my dream and this forum is the room.
    I can remember that you wrote that!
    I hope you 'll soon find a good eye doc.

    When I got diagnosed in the summer of 2010, I was worried about my eyes too.
    The specialist that diagnosed me, referred me to her collegue, specialized in eyes.
    They did not find any Wegs-involvement in the visual zone, and I remember feeling very relieved.

    I hope you 'll get it sorted out soon too.
    The less stress and uncertainty, the better...
    Living with WG/GPA since june 2010...

  10. #20
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    I'm sure I read it correctly at the time but my goofy Weggie mind changed it and goofed it up! I really have to watch that sometimes.
    Anne, dx'ed April 2011

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