Forum

So very, very scared.

When i have had my last 2 relapses and was in bed for quite some time,i had some new symptoms that were of a mental kind, and i felt like it was a bit like dementia, i was making a pie something that i have done for many years, and i got really confused and upset, and couldnt work out how to do it, i did in the end but it took me a while and i had to sit down leave it, then go back to do it,and then i was in the shower one day and couldnt work out how to wash my hair,and i ended up upset again,although when it happens it doesnt last for more than half a day or so, it scares the hell out of me,it hasnt happened since last year,but i am starting to relapse again and fear it may happen again,and i am so scared i am going to get dementia, my father had it, and i know how bad it gets, cant cope with the thought of that happeningi would rather be dead.

I also get feelings like i am loosing my mind and have to try and do something to take my mind off it,i cant even sit and listen to people talking, i have to be on my own to try and get a grip, its as if every nerve ending in my body is screaming out,has anyone else had this, because i really dont know how the hell to cope with it.

Sorry, the worst I get is complete blanks when I’m looking for a word to use in conversation, or when I want to say somebody’s name - I can’t imagine how you must be feeling just now, but ((((((((((hugs))))))))))

Luisa x

Well, whatever’s going on, the painful anxiety that you are suffering sounds as though it is very hard for you to squeeze much pleasure out of your life at the moment.

For me, that would be reason enough to talk your concerns through with a sympathetic medical professional, if you are lucky enough to have one. I mean, it’s one thing if you are a person who can push worries to the back of your mind and keep them there (although they do have a way of leaiking out, in my experience,) but it’s another if you are just being made miserable by how you are feeling - which it sounds as though you are.

The forgetting how to do things only happened to me once, years ago - I got into my husband’s car to drive us home from somewhere (I was the sober one) and I just could not remember how to put the car in gear and manoeuvre it (it was an automatic and I drive a manual, but had driven his car countless times.) It was only for a few moments, and then things were fine, but I’ve never forgotten how frighetning that felt. So I have felt a tiny little edge of the giddy, swirling panic you feel when that happens,. Not funny.

I do think it might be worth talking it all through with someone to try to give yourself a bit more ease of mind. I really hope things pick up for you and that you manage to dodge the relapse you can feel lurking in the wings.

Alison

x

Hi Anon,

Please don’t think that you are the only one out there with similar symptoms. I have lived in this house for forty years, since I was a baby, but I last year I actually got lost! I really thought that I was going loopy, but I have since learned that these symptoms are not that rare. I now see a neurological psychologist, but this is more to allay my fears than anything. Brains are very complicated organs -like a myriad of electrical wires, and as MS is all too keen to batter it, we are bound to have short circuits. In the same way the MS brain embarrasses us by ‘forgetting’ words in the middle of a sentence. The only good news to this is that our brains (no matter how moth eaten or not) is keen to heal the scars that we have. I know that I have had some terribble spells, but at the moment I haven’t had such an episode for some time. And in the same way, your brain will be keen to put up a fight. But as I say, I did feel heaps better when I was put in touch with a neurological psychologist, so there is no reason to think that you won’t be helped in the same way. Your GP could be the first port of call.

And good luck!

Moira

Hello,this has happend to me. I tried to light a candle by running it under the tap a few months ago.Three times I did it and couldn’t understand why it wasn’t lit.My husband saw what I was doing,I just counldn’t see what I was doing wrong.

I’ve also struggled to do simple every tasks,I know I’m doing something wrong,but can’t work out what.This has been heppening on and off for a few years now,it’s reallt scarey and upsetting.I hear what people are saying but don’t reallt take it in.

I’m seeing a neuro physc.and it is helping to tell someone who knows what I mean.Just being able to do that is reasurring,it’s early days and I 'm relapsing now badly so getting the confusion a lot,but I know it will help me,my emotions when I see the physc.again.She helps me to put things into perspective.

Is your GP helpful/supportive? I think you should see them and see what help they can offer.It would make you feel less alone with it,because this particular set of symptoms are really isolating I find. More so that the physical ones.

I know you’re worried because of your Dad,but you know that doesn’t mean it will happen to you. I know that’s pointing out something you know already but sometimes having someone else tell it you helps too.

Ask your GP if they can refure you to a neuro physc,mine knows all about MS so it’s I feel as though that’s part of the battle if you like,I don’t have to explain so much,she justs knows.

You’re not alone.We’ll get through this together.Take care love,xxjo

ps,sorry about typos.

Hiya

Please try not to worry too much about this. I’ve done various things like this lots of times and YES it makes you feel like you’re going mad and is very scary. I’ve had times when I’ve not known how the tin opener works, got lost on the way to a friends house, nearly got locked in the supermarket (everyone had gone home and the security guard found me in an isle and asked me to leave!, I must have been standing there for an hour!), forgotten names of people, forgotten what I’m saying in the middle of saying it, had several cups of tea lined up on the counter cos I wanted a cuppa…went to make it…back to the living room…wanted a cuppa…went to make it and so on…only noticed the other 4 cups of hot tea on the counter when I ran out of mugs! and a LONG list of other things.

It might be worth speaking to your MS nurse or neuro to see if they can refer you to someone about your cognitive problems. I had a test done which showed that my short term memory and planning bits of my cognition were affected and gave me lots of ways to help deal with it. The main thing from it was it taught me that I wasn’t going mad, it WAS my MS causing this, once I knew that, I didn’t stress over it as much so I wouldn’t panic and get worse, I could stay calm, switch off for a bit and got back to it and be able to carry on.

Sue

xxx

Thanks so much for all your replies, i wanted to go anon on this,becuase i was really embarrassed by it, its very hard for me to admit to it, and i am finding it so very hard to handle,i dont feel quite as bad this morning, and i would be lost without all you to help me, thanks again i am trying to not stress too much.

jaki xx

I’m sure your cognitive symptoms will ease, think we all get so me to an extent and they are transient if were lucky, my main problem was anxiety and not making them worse by panicking. Not an easy solution and sometimes like me may need help of medication for a while and a course of CBT. when it abates and you can see through it, which IT WILL , you will feel much more confident to cope with it when it’s a problem and forget about it when it’s not.

Cognitive problems are really common in MS so you’re definitely not alone. Mine started with word finding problems, but have gradually become memory based too. I really struggle to concentrate as well as I used to too. I’ve also had a couple of periods of not being able to remember numbers long enough to transfer them from a page to a spreadsheet (I have a maths degree so this was really scary for me) and last year I had one particularly crazy 4 week stint of not being able to navigate - I couldn’t remember how to get from A to B in my local area. For example, I would drive in completely the wrong direction to get from my house to the supermarket. After a few miles I’d realise I was going wrong and stop, but I’d then be unable to work out how to get to the supermarket from where I was.

Like the others have said, a neuropsych assessment and advice might really help you. Why not give your MS nurse a call and ask?

Karen x

I know how upsetting it can be but please, don’t be too scared.

I have had a horrid year with illnesses and relapses this year and around February I lost my speech with a relapse which was awful. I was in hospital and after a few days the Physio came to see me to get me walking again etc. When I got out of bed, I had completely forgotten how to walk with my sticks. I just stood there, it wouldn’t come to me at all. I couldn’t walk!

I was very upset but the Physio calmed me down and told me not to worry and we’d try again the next day - she said that my brain was probably taking all its energy trying to get over the relapse and help heal my speech that it hadn’t got ‘room’ for my walking. She said if we tried each day it would come back. She was right.

The point I am trying to make is that sometimes our brains can only cope with the relapse or getting over the relapse so other things fall by the wayside, temporarily. I hope this is so in your case and you can take some hope from this message. I hope so.

I wish you all the luck in the world with your recovery,

Sally x

I didnt say i was on my own, and i DO have a grip, i have my family for support,but its good to know that other people have had the same, and got through it. that why i put my post on for some support from others that KNOW what its like.