Disorientation - is this possibly a symptom

New diagnosis and before diagnosis
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Hello all,

I am new to this forum and found myself here as a result of an internet search into some unusual symptoms I’ve had over the last few weeks. I am really unsure whether they could even be anything to do with MS or something totally different, but I’m struggling for answers specific to my situation. I just wondered whether if I described what is happening, someone here may have experienced similar (or perhaps noone and then I know I am barking up the wrong tree). I hope that’s OK.

Recently, there are situations where I suddenly feel as though I lose orientation in the space I am in; like I don’t understand which way I am facing, or where I am in relation to other objects etc. This isn’t a mild feeling, but overwhelming, and it causes me a great deal of confusion and panic when it happens.

For example, I have worked at the same place for 10 years and used the same toilets during that time. However, lately I go into a stall and when I get up to leave, I get this sudden sense that I don’t understand which stall I am in, or what direction I am pointing, or which wall I am facing, or where I can expect to be when I leave the stall. It has happened in other places I am familiar with too, such as in bed. I feel like if I need to get up to go to the bathroom or something, I don’t understand which way I am facing, which way around the bed is in the room, where I will be in the room if I get up. It’s hard to explain but it’s very disorienting and completely new to me. It isn’t like memory loss… More like a loss of sense of direction or spatial awareness. I don’t know how else to describe it. I just know it’s new and very odd.

Does this sound at all like anybody’s experience and possibly linked to MS at all?

I ask because of the internet search, but also because I have had a diagnosis of fibromyalgia for many years which I have never been sure quite fit. I have lots of symptoms, but the most prevalent is consistent pain and weakness in my legs. Sometimes my legs have literally got to the point where they seem to hardly work at all after walking around a lot, not aching like from a workout but as if they have run out of batteries and signals don’t get through to them. I have had to actually be carried back to the car sometimes. So I suppose MS is something I wondered about but never really pursued as it wasn’t mentioned by doctors.

I would be really grateful for any advice or information people may have, and to hear others’ experiences. Thank you.

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Similar but not quite the same. in the very early years, I was still in high school (US ages 15-18). I had to carry the school map, my schedule, and all my locker combinations at all times because I’d be walking to class and suddenly everything was unfamiliar, like I’d never been there before. Or I’d walk into a classroom and feel like the other students didn’t belong there. It happened on and off for a couple years, but only during the warmer months and in the afternoons when I was more tired. I’d even get confused on the walk home from the bus! I knew that I had to go up this road, but it all just looked so different.

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Hi Raggydoll , I’ve never experienced the disorientation that you describe but yes, most definitely on the walking - my first MS symptom was optic neuritis followed a few years later when my right leg stopped working when while I was out shopping. I think it’s a fairly common symptom. If you haven’t done then I would get your symptoms checked out. Could be MS , could be something else but in my , non expert, opinion I think they need checking