Sense of dislocation

Hello, I have not been diagnosed with MS. I had an appointment with a neurologist on Monday . He concluded the symptoms I have had are of a neurological nature but cannot say what is the cause of them. Most of them cleared up after about eight weeks but I still have a gradually improving numb left foot. I did an update post on the “Awaiting diagnosis” board. I’m okay about the way things have been left because it may have been CIS and, if the other symptoms do recur, I can go back to the neurologist. Today, however, I have been reminded of something a little disconcerting that happens to me when I do something out of the ordinary for me. I walked home by a different route. I was aware of the way this has made me feel in the past so I walked up the road that runs parallel to mine which then put me coming towards my house from the usual direction (I haven’t got OCD, although it certainly sounds like I do!!)

It didn’t work and I am left feeling decidedly out of sorts. I am having difficulty describing how I feel. Just not right. It’s a sense of dislocation from where I am. This has been happening for over a year. I didn’t mention this to the neurologist. Is this something that any one else has experienced?


hi helen

i get that quite a lot.

the first time was in greece just before my diagnosis.

i nipped across to a shop 50 yards from the hotel to buy a watermelon because i was craving it.

it took me 90 minutes to get back!

i was lost.

the more stressed i got the worse i became.

when i still had my motability car i got lost in bolton town centre (5 miles from home).

silly things like new road markings get me.

we should form a club The Lost Souls!

or even better a band!

carole x

Thanks Carole. Good to know I’m not the only one but sorry you also experience it!

My mum died from dementia four years ago and I sometimes wonder if I am heading in the same direction. I would really rather have MS than that. Of course, neither would be the best option. My comfort is that I knew that what I was experiencing wasn’t right. It was all completely real for my mum.

I rang my husband, who is wonderful, and chatted to him for a bit about how I was feeling. All of a sudden, during the conversation, something clicked in my brain (like when your ears have popped and they un-pop) and I felt normal again and completely “present” in the house. I had about an hour and a half of weirdness before that.


it’s such a freaky thing this ms.

i’ve always been attracted to alternative lifestyles but this is bloody ridiculous!

i totally get what you are saying because like you say, pop and it’s gone.

mine went away after a few glasses of wine.

so forever after that will be my remedy of choice.


carole x

1 Like

When there are odd and alarming health things happening to someone who has had reasonable (or at least predicable) health before, it probably isn’t surprising that that person feels out of sorts and out of balance in every way. Even if this was happening before you had obvious neurological symptoms, I sometimes wonder whether our bodies ‘know’ before we do that something isn’t quite right here. It’s a disconcerting time, and I think you need to cut yourself a bit of slack here and try not to assume that your feelings are anything other than a reasonable response to an unnerving and worrying time for you. For what it’s worth, I felt more than a bit bonkers in the months leading up to my MS dx - it was not a fun time.

But if you are alarmed by how you are feeling, do talk to your GP, who might be able to help or, at least, to reassure.


1 Like

Hi Helen, I often get ‘lost’ in places that I should know as well as the back of my hand. I even sometimes get lost in this house, and I have lived here since I was four. MS is a mad disease. Moira