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Has anyone experienced Charles Bonnet Syndrome with MS?

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Old 08-27-2011, 04:56 PM #1
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Had kind of the same thing dimples had. I was in the bathroom watching the hinges on the door slide down and get wavy.
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Old 08-27-2011, 05:09 PM #2
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I have seen things during a flare that I KNOW didnt happen and I KNOW were not there, but I never said a word to anyone.
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Old 08-27-2011, 08:01 PM #3
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Originally Posted by Dejibo View Post
I have seen things during a flare that I KNOW didnt happen and I KNOW were not there, but I never said a word to anyone.
For what it's worth, Dejibo, Dr. Sacks stated in his online lecture that he believes as few as 1% of the people experiencing these "lucid hallucinations" ever tell anyone about it.

I intend to open up the discussion with my PRIMARY doctor next week, only because he's the one I trust the most right now. Nevertheless, I intend to go to the appointment with printed material about Charles Bonnet Syndrome so the appointment doesn't spin off into a psych exam referral.
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Old 08-29-2011, 05:04 PM #4
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i've not heard of this link to MS myself, but i know it doesn't make you crazy.
i would confide in your dr or check with an opthamologist.
there must be a physiological reason and it's not mental.

don't keep this to yourself. it may be a sign that you need to look for a cause.
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Old 08-29-2011, 10:40 PM #5
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Sometimes I wake up from dreams/sleep and see something. I try to pick it up and it's not there. I realize right away that I was hallucinating. I just laugh at myself and wake up more..

It would never occur to me to mention this to a Doc, unless it was happening a lot and during the day, when I was fully awake.

It seems like MS makes us more attuned to everything our brain does. These things are probably perfectly normal but we latch onto it as if we're going nuts... I don't think we are going nuts, we just have MS.
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