Worried bloggers with MS
Type of Spiritual Experience
A description of the experience
1. Question - I have been experiencing vivid hallucinations for about a year - I've kept this problem a secret from all of my doctors and my spouse because I've been so concerned about what it might mean. I am fully aware that the visual hallucinations are not real - nevertheless, it's distressing.
I finally got up the courage to start looking for reasons for these hallucinations online and I stumbled across a link to Multiple Sclerosis and Charles Bonnet Syndrome, a condition wherein the patient is not suffering from psychosis, knows that the visions are not real, has visual impairment due to optic neuritis or a lesion on the brain affecting visual accuity. It has been reported in patients suffering from macular degeneration, multiple sclerosis, and a few other conditions. It is nevertheless quite rare.
Well, SNAP! Maybe I'm not crazy. Has anyone else experienced this problem? If so, how did you start the discussion with your doctor to try to make certain that you weren't stamped with a Crazy Person sticker immediately?
2. Reply There was a longtime member of MS World forum who had visual and auditory hallucinations due to her MS. She was an extremely intelligent person, and had always had a very technical job in her career but with SPMS MS the symptoms included these and she often posted about it.
3. Reply Although it sounds awful to say that I'm glad to see others experiencing the same phenomena, it really does allow me to shrug off some of my worries. I've been so concerned about this for so long that I was really afraid to even Google for more info since I was afraid the end result would be, "You're bonkers. 'Nuf said".
The most interesting and reassuring site I found was an 18 minute lecture on the Syndrome by Oliver Sacks, the neurologist portrayed by Robin Williams in 'Awakening'. The system is telling me that I have too few posts on record and I cannot yet post links within my messages. If you are interested, go to ted.com and search for speaker Oliver Sacks. The lecture is entitled "What hallucination reveals about our mind".
dmplaura, I'm heading off now to look up Alice in Wonderland Syndrome. If I had a choice, I'd much rather fit into that dx just for the pleasure of watching the doc's face when I said, "I think I have....".
4. Reply 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