Failure of the brain or nervous system? Or both???

Hi: I would guess it is most often related to trauma. I remember when I first went into rehab I would roll my wheelchair up to the little mirror over the sink and just stare at myself. It felt like I was trying to see who this was in the hospital and to reconnect his numb body to my sense of myself. I never told anyone about it because it was freaky but it helped me just to keep looking at myself. It lasted a week or two and went away and I hadn’t thought about it until I read your post. It now seems related to the trauma and how swiftly GBS changed my body, my life and my identity. Jeff

Hi Birdie! Good to see you again:) I went through that weird feeling also, when I was still paralyzed. Actually I think I went through it many times-with each of my paralysis events, I never really thought much about it I just thought it was another one of those things that went along with this stuff. I had it with my hands and shoulders also, up until I could get them moving again. I first noticed it when my pt/ot would touch my arm and lift it, the first thing that went through my mind was what is that guy doing with someone elses arm. I never gave it a a thought after I could move my arms and legs on my own. Thanks for the enlightening Birdie:) , now I know its not all in my head;) . Hope you are doing well, Hun.

Hi Birdie,
thank you for sharing your story.

Thank you very much Jeff, after reading your post I suddenly remembered the first time I saw myself in a mirror in hospital. It was when I was already on the mend, I was in the bathroom with a wheelchair and I took my first shower by myself (it was the best shower of my life). But when I looked in the mirror and saw myself, I didn’t recognise the image on the mirror as my own self, I looked at it as if it was a strange, new person I had not seen before. It was weird. Afterwards, when I left hospital, it took a while before I could ‘recognise myself’ in the mirror.

Thank you all again for helping me remember.

The Man Who Mistook His Wife for a Hat by Oliver Sacks is a great book and I am guessing that is the one to which you are referring. The man was in the hospital and thought the nurses were playing a Halloween trick by putting someone else’s leg in his bed. That is why he threw it out of bed and wound up on the floor. It was a great book.

I applaud you for presenting this post. As I read it, I thought to myself that Jeff should read this. Funny how he was the second to reply! I could not look in the mirror because my hair which was long, pale blonde and like silk knotted up by the second day – it looked like an electric beater had attacked it. I naively thought that I would be able to fix it so I wore a beach hat. Sadly I had to cut it off months later. So much for positive thinking! I thought this major change in hair was the reason I could not find myself in the mirror. But now I think it was what everyone on this post has experienced. It would make sense that the brain would be affected. Remember the difficulty in recalling simple words – like bus? I am now reading WHY WE MAKE MISTAKES hoping it will help my short term memory.

Thanks for this interesting post.

I also very much have enjoyed Oliver Sachs books in the past. I read his latest on music since this neurologic stuff hit me, but I have had enough strange neurologic phenomenon on my own and have not tried to reread any of his. One of the things that have been discussed regarding this subject, and that I saw best with my mother, is that “Nature abhors a vacuum”. When sensation is not there or something really strange happens to affect perception, the brain tries to fill in the gaps. In his stories, he talks about people making up ways to explain what cannot be understood.

My mother had a tumor that metastasized to her brain. When it was removed, she lost all function of the left side of her body, but also recognition that there had ever been a left side. It seemed to me especially cruel of life that she could not understand why she could no longer walk. She had lots of memories of walking and moving and she had no ability to compensate to relearn walking because she did not recognize that her left side was there and was not working. To her, the right side was all there was and it moved fine, so she asked many times a day why she could not walk or get up any more. She also would pick up her left hand and think it was mine. She did not care about dressing the left side because it was not part of her.

I wonder if the need to look in the mirror were not something a little different. It seemed to me that life changed so suddenly and so irreversibly that I had to search for ways to confirm that this was still me–to reaffirm my identity–and also that this was not some long nightmare. I also wonder if the perception of the legs as dead and looking different is not an effect in the brain not just the periphery. Needing to look at legs that have no feeling seems what a brain might do to see if they are still there. The fact that they looked so different to you, though, may be just your brain filling in the vacuum, but it feels to me like the brain altered the image. There are more and more ongoing data that none of these diseases is solely peripheral and that there are central (in the brain) manifestations in a lot of people although many experts vehemently deny this. Being really sick and in an ICU on lots of medications can cause alterations in perception as well. If ever anyone has an altered image of a body part, though, perceiving it as very different than it is to others, I hope that an MRI of the brain is done just to make sure that there is no problem in the brain that might be leading to this alteration in perception.
WithHope for a cure of these diseases.

Birdie.
I have to go back and reread the book. I read it years ago. I only remember the guy we discussed and the man with a PhD in music who tried to put his wife on his head. I remember that they gave him a glove and asked him what it was for. He guessed that the “fingers” might be for holding different sizes of coins.
Thanks for the “smarty pants” comment….I’ll take anything that makes my memory seem better than it is!! My therapist says that I have forgotten more than most people ever know – he is so kind. Whenever I would start to panic at what GBS was doing to me, he would calmly diffuse my panic and say it was normal. When a teacher (me) has to ask in the middle of a conversation, “What do you call that yellow thing that you put kids in and drive it to a school?” I could not access BUS from my vocabulary. I am trying to teach myself French which is either the stupidest thing I could do at this time or maybe good if it forces the brain to make new pathways. We’ll see.

I remembered there was a previous thread about new research into CNS and CIDP. Julie had found the information and was very kind to share with us all. I brought the thread back up.
WithHope

OK, truth to tell – this happened to me but not only with regards to my body. I had those “who’s leg is that” feelings/emotions but the scarier moments were when my perception was off about something else. For example – one night I was convinced my dog had huge tumors on his neck. I could see them and feel them but my husband was looking at me like I was insane. It wasn’t just a visual perception problem, it was also tactile. It happened to me again when I walked over a portion of a wood floor and became convinced it was swelling with water from a leaky pipe. I could even feel that it was wet BUT IT WASN’T. All of this was just perceptual – none of it was real. I’ve noticed it from time to time when I’m really tired – it’s usually my cue that I’ve been trying to stay awake too long but I have to tell you it’s pretty scary for both me and my husband. I mean it’s not all that far from a hallucination except that by now I know what I’m perceiving is not real so that helps. I had that happen to me last weekend when I looked out at the woodpile and I could have sworn that most of it was gone. The next day it looked the same as always but it makes it hard to trust myself now that I know my brain can play tricks on me.

Just out of curiosity – have any of you ever taken chloroquine for malaria prevention? When I was in the Peace Corps there were about 10 of us who had visual disturbances from the chloroquine and couldn’t take it. The visual disturbances I’m having now are not all that different from that but I can’t just stop taking a pill to make them stop now like I could back then.

This is a very interesting thread. I mentioned in earlier threads that research had indicated that about 30% of GBS patients experience some form of hallucinations during the acute phase. I certainly did. That may indicate brain involvement but neurologists still refuse to believe there is any such involvement. I suffered dizziness and a kind of brain fog for months but was told it had nothing to do with GBS! There is still so much we don’t know about the effects, but I think it likely there is cognitive disturbance either based fully on trauma effects or there is as well some brain involvement.
Carolyne you were right that I would be interested in all this. Jeff

I had quite a problem when my right arm suddenly quit working-just hung there. I would hold my arm in my lap with my left hand as it fell off any chair I was sitting in. It was so obvious something was wrong with it. After 6 months it went away. This was pre-diagnosis of CIDP.

Here I was telling the eminent neurosurgeon my arm was not responding and he looked at me like “what a nut”. I have learned neurosurgeons have NO clues about anything neurological and definitely not about referrals to neurologists.

CIDP gave me double vision/loss of depth of field. When I go to open a door I fumble putting my hand out on the door to find the handle.Walking is an obstacle course as the floor seems like it’s moving up and down. Most of the time I must look at the floor and carefully gauge each step. Florescent lights totally disorient me in public offices/stores.The eye specialist said my vision problems were no big deal. He certainly wasn’t stumbling in my shoes””