after spending many years with Double vision which is controlled with prism glasses I have been trying to find out what causes me to feel so disorientated when I go out to busy/noisy places and affects the quality of life.
I have now been diagnosed with cerebral visual impairment which is thought to be linked to MS which was diagnosed in 1981.
I wondered if anyone else has had this diagnosis and if there is any chance of it getting better?
I have been told my eyesight is good (with the prisms) and that I am classed able to drive, but I do not feel at all able as the debilitating effects would not allow me to do so safely.
Thank you for any information on the above.
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santosha
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That's interesting, I'd never heard of cerebral visual impairment. Can you explain more about how you feel when you're out and this happens. Also what kind of debilitating effects do you experience when your driving like you said? Being in a loud busy crowded place affects me cognitively. It's very overwhelming for me. I do kind of feel like I visually shut down a little. My peripheral doesn't seem like it's working right. And I'm not perceptive when in these situations. Kind of out of it.
Disorientated it the best word I can find to describe how this feels for me when I am out. By the time I reach the check out in supermarket I have little idea of how to pay etc. A great deal of cognitive disability effects. I stopped driving about 4 years ago because I was fine on the short journeys going to wherever but whilst doing shopping etc. the disorientation would become active and the drive home then would be very uncomfortable, feelings of high anxiety because of the diorientation experienced and vision disturbance. C.V.I. has been known about for a while (put in your search engine), especially with children, but some people with MS also display the same symptoms and have been diagnosed. I was told you can learn to manage these situations by changing how or not doing them. No magic pill sadly.
That sounds like a lot to deal with. Wish there was a magic pill. I guess I have a mild similarity to that. If I get way too much stimulation like in a really busy loud restaurant then it's even hard to focus on what people are saying. Like goatgal said if there's too much data coming in it's very overwhelming.
I agree, it does help. Hearing another person get overwhelmed in situations helps me not feel so weird. Because some people that don't understand, like my son who is an extrovert, thinks I'm weird sometimes with the way I feel sometimes.
I'm sorry to hear of your struggles. I also have prisms in my glasses to correct double vision. I feel I and others are safe driving in my local area, but I don't go far afield or drive at night. I would love to visit friends or family, but my brain shuts down in noisy, crowded places so freeways, unfamiliar locations in cities, airports and so forth make such visits impossible. And I will not go to noisy events or crowded restaurants. I didn't know there was a diagnosis for this but I knew it had to be a result of brain damage from MS. It happens to me when there is too much data coming in on too many channels simultaneously: I can't walk, listen, respond, read all at the same time. I recover quickly if I can withdraw into a quiet place, sit down and relax...but that's not always possible, so I avoid putting myself in those situations.
Thanks for your reply. I am so disappointed not to be able to drive as my independence has gone now. I like your phrase "my brain shuts down" I can understand that. Unlike you, I had no idea it was to do with MS. I have been going to Orthoptists at Hospital for many years and was never told this may be the case, even though I could never overcome the problems with the prescription they gave me - they just shrugged their shoulders, and gave the umbrella term of Bifocal Vision Impairment. Until.....a research Orthoptist happened to see me at one of these appointments (years on) and she put me onto the neuro Opthalmology clinic. They did thorough tests but could find no issues with my eyes but suggested I see a neurologist which led me on to research and I found the c.v.i. site. I contacted them and they got back to me with lots of information. In the area I live I do not know of any Neurologists who understand this situation so am waiting for further knowledge from C.V.I. For many years I have not seen a Neurologist so my Doctor seems to think I should go for the brain scans again.
Here's a book I found helpful: "Facing the Cognitive Challenges of Multiple Sclerosis." [Jeffrey N. Gingold, 2nd ed. 2011, Demos Health, pub., NY] His impetus for writing the book was becoming lost as he was driving home, a route that was completely familiar. His wisdom, and knowledge, helped me forgive myself for panic when a setting or activity overwhelms me. If you cannot obtain the book on loan from a library or a MS society, I believe it is still available through a bookseller. It was a lifesaver for me, which explains why it is on my bookshelf. I hope you find comfort and relief in his words. He is now a well respected MS lecturer on this subject.
my husband’s elderly cousin had a detached retina years ago and she only stopped driving for a hot minute.. now she goes all over the mountain in her convertible.. prism glasses and all..
I never heard of 'cerebral visual impairment', I do suffer with visual impairment caused by MS. When I get in loud crowded places I loose all orientation & grab my hubby's hand to get out of it. I don't like those kind of places & try to stay out of them. Hope things get better for you. Mary I am praying for you.
Thank you for responding. Yes, I was advised to keep away from the things that set off the disorientation which I already was doing. I, like you, hold my husbands hand and am grateful for it.
I complain to my Neurologist about having double vision. He informed me the double vision was due to my MS progressing and he switched my MS DMT immediately. Unfortunately that did not resolve my double vision and I started having other issues with the neurologist. As the monthes turned into a year, he actually told me because I had progressed to secondary progressive MS there was nothing more he could do for me and suggested I go home and relax and keep the stress down to help the MS from escalating too fast. Needless to say I realized, I was dealing with a very subpower, (which is a nice way of saying very bad) doctor. I switched to a doctor the National MS Society called a partner in hope. Both the doctor and his head nurse which were MS specialists. When I complain to the nurse about my double vision she informed me that double vision had nothing to do with my MS but was instead related to my balance issues. A whole new world opened up for me and this was just one of the many tips my new doctor and his nurse gave me. We did more extensive testing than the old neurologist had done and we discovered that my MS had attacked my cerebellum,the center of our balances well as many of our bodies functions. My cerebellum no longer filled the entire cavity it was meant to fill. It was now about 25% smaller. No wonder my balance was off and I kept falling down. When you put 2 and 2 together, I'd have to say that my bad balance was due to my cerebellum being attacked by my MS so therefore the MS did cause my double vision in a chain reaction effect.
How's the question to your neurologist if? You're double vision. Could? Be. Related to your bad balance? Ask for more testing and see what has changed. Some clues should be forthcoming and hopefully, you'll find out exactly what is up with your eye issues. Fancy59.
Thank you for responding. I have yet to meet a Neurologist that considers Brain malfunctions due to MS. They look at me and because I don't outwardly display disablement then they brush me aside and one has even said that he doesn't think I have MS. This was after a diagnosis made in a top London Hospital where I spent a week as in patient having all the tests, lumbar puncture, eye movements etc. etc. with a definite diagnosis at the end of it. My double vision has been put down to a squint, even though I have many incidences of eye problems since MS, Nystagmus, double vision, loss of colour vision, optic neuritis in all its forms. I did take steroids for a time which did stop the double vision but now it is back and does not go away. I have been asked to visit another Neurologist but wont do that until I am assured he/she has excellent knowledge of the cognitive Issues that are another very disabling aspect of MS. It is so good to hear that you were able to work with your Neurologist to look more deeply into your problems and that you have a deeper insight into what is causing it. All best regards.
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