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going mad

Is it just me, or does everyone with MS feel like their memory has desserted them.

Most of the time I seem to struggle to remember all sorts of things. I have to write down the hours that I am working from week to week, otherwise I would never remember anything.

Last week I met a girl that I used to go to school with. She is part of the Prince’s Trust team that is helping my son to get a job. 6 days later, I was an escort on a school run. When the driver introduced me to the childs mother, she said “oh yeah, I know Peter” I had no idea who she was, until she told me. I had only met her 6 days before that. I was pleased she knew I had MS and probably put my forgetfulness down to that.

I feel like I am going mad

You’re not going mad, it affects us all differently. My main problem (that appears to be getting worse) is forgetting words and names - I know the kinda “shape” of it, and everything about it, but I cannot remember the actual word - people’s names are the worst, it can be quite embarrassing.

Luisa x

I’ve found, much to my embarrasment, that on two occasions recently I’ve forgotten my own phone number . Two folk needed to get back to me with a reply about something and for the life of me I couldn’t remember it - I don’t know what they thought! I’ve now put a sticky note by my phone with it on - oh gosh, doesn’t life get ‘interesting’!!

Bren2 x

I haven’t been diagnosed yet, but this was one of the many reasons my GP referred me to a neurologist. I swear, I have the worst memory in all of the country! I’ll be thinking something and then literally just a minute later, I’ll forget. People hear me say “now what was I doing?” quite a lot!

I also struggle to remember words as I’m saying them. I’ll stop dead in the middle of a sentence - I can picture the object in my head, and I can describe it – but I can’t think of the WORD for it. SO frustrating!!! Even simple words escape me (door, fridge, comb, shirt, book…words I use on a daily basis). It is by far the most frustrating thing I’ve experienced, out of every symptom I have.

I was starting to feel quite dumb, until I joined this forum and started researching. It’s good to know that this is actually something other people have experienced and can understand. Cognitive issues are some of the hardest to explain or prove, sadly.

Bren, don’t feel bad. I forgot how to spell my own last name once. Sad, but true…

I reckon that anybody worth talking to will understand.In a conversation with a stranger,if it is appropriate ,I would say something like,“Please exscuse me for forgetting your name in 30 seconds but I have multiple sclerosis and my memory is appalling”.

If they cannot accept that then …Tough. I ALWAYS say multiple sclerosis and not MS,'cos there are other abbreviated conditions out there and I wouldn’t want to confuse them. If they are alright with this then keep using their name in the conversation, and eventually it will sink in a bit further.

Don’t get stressed trying to remember things that can be written down and if needed put in your wallet/purse.Things like phone numbers,NI number blah blah.

Wb I think

I store a lot of info in my phone book in my mobile phone, the entries are all listed under coded names that I remember about 90% of the time

Luisa x

Hi all

For years I have had a bad memory and didn’t realised it was MS, it is nice to know I am not alone and can explain this to people now. I try to do word association, sometimes it helps. It is very frustraing though as it makes you sound a bit dumb.

sue x

This thread reminded me that I had been struggling the last couple of nights to remember the name of the actor in “Gone With The Wind” I could see his face but no way was the name coming. I just typed up the Internet Movie Database when Errol Flynn popped into my head – smooth, as you like. That is how things are for me. A name or a word just disappears and then pops back at a later date as though it had always been there. Could be old age but I’m not willing to accept that so I’ll plump for it being a feature of MS.

Jane

I am so sorry that you have problems with your memory - this has to be one of my worst symptoms too. Words are a problem, but far worse than that has to be both faces and geography - and by that I mean recognising directions. I am always betting lost in hospitals even if I have just been given the simple directions. I seem to be well known at our local surgery, and when I get lost and end up in the wrong room, the staff just point. It is very embarrassing, but something that we have to cope with.

Best Wishes,

Moira

Not to worry…Of late I have been saying,“My disability is a rehearsal for your old age”. A couple of people actually began to think about what I had said. I’ll wager their attitude to us has changed.

Wb

Last week I got into a conversation with a school governor when I suddenly froze mid sentence because I couldn’t remember the Head teacher’s name (my boss). Something like 'Oh you mean Mr . . . Mr. . . I couldn’t even think to blag my way round as I was so stunned at not being able to remember. Then later at a meeting I just could not get my head round the words needed to communicate a simple matter that I wanted to say.

My memory is awful. My son uses it to his advantage. He gets his pocket money about twice a day instead of once and I forget when he is grounded lol!

I have tried explaining it to friends as when they ask me “do you remember when” and I have a blank expression on my face they now know why.

Rabbit fan, I’m so glad you mentioned the thing about geography/directions. I never have considered this until you mentioned it.

Everyone knows that I’m terrible with directions and have been for years, but I never associated it as another “symptom” of MS. I have gotten lost even in my own town. I’m well known for being able to GET to a place, but not get back home – in other words, when I have to reverse the way I came, I can’t do it. I get so flustered that I rarely drive now. I recently invested in a TomTom and it’s the BEST thing I ever did! I’m now once again driving confidently and I know that even if I get lost, the TomTom will tell me how to get home.

Lol HeatherFeather30 I rely so heavily on my SatNav my kids have given it a name and ask “where does Daniel say to go Mum?” when I’m lost or are not sure where to go!!!

DL xXx

I am awful with directions too - I know where I am, and I know where I’m going, but the bit inbetween? My husband used to get very annoyed with the routes I would take to get places, it’s usually the most round about way possible - I always get there, but there is usually a quicker, more direct route that I haven’t taken, and that I should have known. It’s only when somebody says “but why didn’t you go that way?” thatI realise what I’ve done. I also have a well used sat nav.

I’ve also noticed that I’m not “seeing” pictures properly sometimes, I can see all the components, but they don’t join together and make sense for a while. A similar thing has started to happen when somebody talks to me unexpectedly - I hear all the syllables, but they take a minute to join up in my head so I understand what has been said. It’s more apparent when I’m tired.

Luisa x

Just wanted to say you are not alone. I spend so much of my time starting a sentence then losing the most important word which would make it make sense. It has become such an issue we have a game at home now - the word “Whattzisface” is used to substitute the forgotten word - usually my mum can work out what the missing word or words are.

I know it is annoying and worrying when you do it - especially at work, but if you can make some light of it a bit of comedy can help. I also have a big problem with faces - I know people know me (that’s scary cos I must look pretty bad if I am instantly recognisable) - I can have a good conversation about school days etc and still have no idea who they are. Some of my old pupils still wave and say hello. I return the compliment then usually say “I wonder who on earth that was?” Sometimes a name does come back to me. Because of my stupid memory I completely blanked my aunty the other day and my neighbour’s son. Worse still I saw someone looking at me in the shop a while ago but didn’t recognise them - then it turned out it was my best friend of 30 years - luckily we are still talking. I only ‘forgot’ what my niece looked like once.

Another feature is saying words round the wrong way - again it can be turned into a humourous episode. Did you know my train was recently cancelled through lack of ‘crain trew’, Father Christmas goes round with a ‘soy tack’ and I went to my favourite ‘Shoffee Cop’ (Coffee Shop) on holiday.

I used to think my bad memory was just me but I reckon it is something to do with MS. I am not formally diagnosed yet but am suspected of having it.

Keep sane

Spiderwoman