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Help please

Morning everyone,

It’s been a good while since I posted on here and I wondered if anyone can help, or maybe someone get’s this too. I have SPMS, dx’d 13yrs ago and slowly progressing, I get a host of different symptoms, but over the last couple of month’s I have what I think is a new one, I walk around my bungalow with a walker and when I stand still I feel like my left foot is still moving, but going backwards, I do suffer with a slight nystagmus, when I lay down and sit up my eyes dance about and wondered if it could be part of this, my MS nurse said this is a new 1 on her, any thought’s please.

Thanks Jean

Sorry, Jean, I can’t help as I’ve got PPMS and don’t get that symptom but just thought I’d like to connect.

Hi, Jean! So sorry but I’m afraid I can’t help either as I also have PPMS (diagnosed end of June this year). If your MS Nurse doesn’t recognise this symptom, are you able to revisit your neurologist for advice? I do hope that someone on this forum can help.

Thank you for your replies, I do appreciate it, I will hopefully see my neuro in the next 6 mths. I still think it’s to do with the nystagmus. But again thank you.

your brain doesnt know whether your coming or going… it is going to be some sort of hallucination via your brain. Maybe linked with your eyes.?

I have another one, where i suddenly have the urge to step up when i dont need too, or i go to take my glasses off and i am not wearing them, yet i can feel them on my face.

MS is a weird dude, it can chuck some strange things at us. try not to worry too much are you warm in your bungalow as i know the heat can trigger some weird stuff off for me too. xxxxxx we could write a book on weird science with MS lol. xxxxx

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yes crazy chick I think it might be to do with my eye’s, my ms nurse said it could be to do with the position of my head, but she didn’t have anyone else say they get this, mind we’re all different. Yes heat and cold do it for me, the bungalow is warm, but not overly. thanks for your reply

I went to see my doctor a few months ago and was told I had a definate nystagmus. Most of the time i don’t notice it but when i do it is so strange. My eyes flick to the left and occassionally towards my nose.

I’m SPMS and get something similar.

My mobility is poor but I can still walk, albeit very limited, sometimes when I take a step and put my foot back on the ground I get a feeling as if my foot, usually the right one, has slipped forward on ice, even though it has not moved at all, I even throw my arms out to “get my balance” because it really does feel as if I’ve slipped, but I’m completely still in the same position.

This started about 2 years ago just as I was progressing into SPMS.

It doesn’t happen that often, thankfully, but when it does it’s the most strange feeling, plus I look a right dick head standing there arms in the air looking like I’m on an invisible ice rink !

The wife is like, talking through closed lips, “put your arms down, put your arms down”, “you look like you’er directing the traffic”

Hi Guys, Thanks so much for your replies, it’s nice to know I’m not on my own, you’re right jactac, it does feel like you’re slipping, I get it every day, like you I don’t walk much anymore, only really around the bungalow with a walker, this started on the side that hasn’t really been effected by the ms, it just feels so weird. As far as the nystagmus goes I’ve had this now for over 18mths, that too feels weird, my husband video me laying down and my eyes jump all over the place, same when sitting up, thankfully they don’t seem to do it otherwise.