Help I think I've lost my mind!

I was diagnosed with sle in September. I have been quite ill and had some sort of seizure. I am on hydroxychloroquine and it has started to work. Things seem to be settling down ,I still have aches and pains but can manage mostly but the thing that is really worrying me is my loss of memory,not just forgetting the odd thing but completely forgetting events that have happened is this part of sle ,will it improve?

,it really is upsetting and makes me feel stupid as I get muddled and can't seem to say the word I thinking of , I'm writing list after list to help remind me of things ,will it improve do you think. Thanks x

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  • Hi, out of interest have they tested you for Hughes Syndrome? Some with Lupus also have this, and it can cause terrible memory problems if not treated and also seizures? MaryF x

  • I have problem concentrating...

  • I was diagnosed nearly 14 years ago with sle and it does affect the memory quite a lot amongsyt numerous other symptoms it makes you feel so drained at times I forget things all the time and keeping notes is the best idea for us lupus sufferers I have appointments on my wall calendars and on my nexus 7 and write things to do lists regular a thick note pad is very handy with lupus patients hope your ok soon

  • Thank you for your replies, I am waiting for an appt to see rheumy and will ask about hughes syndrome Mary F. Best wishesx

  • I was diagnosed with SLE 3 years ago and thought I was loosing the plot so I know how you feel, I call in verbal dyslexia only because I am dyslexic, I think of words and then have to change them for smaller words because I just cant get the ones I wont out just like my spelling, my memory is very bad thank goodness for post it notes xx

  • If I am having a conversation often something comes up in chat which prompts a response from me. But if the person talking does not allow me to say what I have to say quickly, I have forgotten it when my chance arises.

    I have to note things down, set alarms when cooking if I leave the kitchen, and for a host of other things

  • This is funny. I have got into the habit of setting the timer for various things. Yesterday I set it to remind me to check on clothes I was presoaking for the wash. When the timer went off I could not remember what it was for so went on about my business and later when looking for my shirt, found it in the basement in a tub of cold water with the rest of my clothes. Now I need a timer with a program that will tell me what I am timing.

  • Hi everyone,

    Tallytutu, yes, yes and yes.

    I have had Sjorgrens for 15plus years and was 'Finally' confirmed as having Lupus last year. I have been very aware of problems with my Cognitive function for 10plus years.

    All of the above comments from fellow SLE sufferers register with my experiences. I am currently pushing for another Neurology appointment as I am very aware of 'looseing my mind'.

    From being a very able multitasker with responsibilities, to a bumbleing shadow of myself over several years, I need clarification to what is causing my spiralling demise.

    Notes and lists have always been a daily activity as my way round Dyslexia. I have never froze with a word in my mind unable to actually write it down until recently!! What next?

    Thanks for spellcheck, however, I have always said to those who say I have spelt it wrong....Do you understand what I have wrote? Its always 'Yes'.

    How much is Medication and how much is Neurology ..........watch this space.

    Just as a point......its taken me 54minutes to write this!!

    Wishing everyone only the best and a problem shared.................is...........erm............you know!!

  • Sadly this is not uncommon. And many of us have suffered this problem without a diagnosis, which caused not a few of us to question our own sanity.

    But chances are the problem will get better soon enough. Hang in there,

  • And if it doesn't you will likely forget all about it.

  • Like many others I have similar problems, what I've learnt recently is to try and keep my mind as active as possible, including doing online quizzes and puzzles. This seems to have helped me a lot. One of the quizzes I do is about memory and tests me on countries around the world. This seems to have helped a lot.

    All the best, it may just be linked to a flare and improve over time.

  • Oops, did I really just right 'this seems to have helped a lot' twice, duh, sign of where my mind is today. LOL

  • You know what they say.... "With Alzheimer's its new friends every day" :-)

    I am luckily a way from that though

  • Thank you everyone for your replies,it's upsetting isn't it to have these horrible symptoms,I'm holding on and hoping it will improve a bit but it makes me feel as if I'm losing confidence in myself. Anyway I've got it and got to go with it,other people have things a lot worse than me. Good luck to everyone here's to tomorrow.x

  • See don't worry. You are not alone. I've had sle for over 19 years now. I felt the same at one point and went to my doctors and told her I thought I was going mad. She said to me if you feel you are going mad, your not. It's the people who don't think they are going mad that need help!!! Which made me laugh. She did give me some"happy" pills and they really helped me through a tough time as I was not coping with my mom having cancer and then passing away. Don't be afraid to ask for help. So don't worry there are some crazy people on here

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