help: Hi all, I was diagnosed with SLE in 2011, am... - LUPUS UK

LUPUS UK

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14 Replies

Hi all, I was diagnosed with SLE in 2011, am i going mad ?? I've had this strange thing happening for a few years where i don't recognize people I've known for years even when they say hello it takes me a few seconds sometimes longer to recognize who they are, Well yesterday l was so embarrassed l came down the path to go into my garden and a car pulled up l looked in the car and thought it was my son, l knocked on the car window saying hello love and stood waiting, after a couple of minuets a young man got out looking at me very strange and even then l didn't realise it wasn't my son!!! oopppppssss it wasn't until the young man said do i know you the penny dropped...I apologised and made my way in... Thinking back it wasn't as if he had the same car as my son not even the same colour!

This is happening more often than not and im getting a little concerned. has anyone else experienced this sort of thing..

Thank you for reading my post.

xx

The mum xx

14 Replies
Musicteach profile image
Musicteach

This has happened to me of late, too. My husband was collecting for Poppy Day and we met the organiser, to whom I was introduced. I went and had a coffee, then joined my husband, and eventually we went back to the organiser...remember, this was only a couple of hours....and I introduced myself and asked who he was! My husband looked terribly embarrassed, the organiser gave a "poor thing" glance, and I wanted to disappear! I honestly wondered if this was the beginning of Alzheimer's, but I definitely am finding harder to place people. I can remember names, though! Have a good day, folks!

in reply to Musicteach

Hi thank you for your reply, its just so embarrassing as you have experanced x have a good day x

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi themum,

'Brain fog' is a very commonly reported symptom of lupus which is often referred to by doctors as 'cognitive dysfunction'. There can be many causes for this including depression, active lupus causing confusion and 'sticky blood' antibodies, which can cause slow blood flow in the brain. Treating active lupus can result in improvements and patients with antiphospholipid antibodies may improve with low dose aspirin.

Have you discussed this symptom with your consultant?

in reply to Paul_Howard

Hi Paul, Thank you for your reply l did mention it to her in June she just looked at me and said nothing ! I'm not due to see her until April 2016 ..Not really sure its worth mentioning to my GP as you never seem to get the same one so no continuity of care and i'm not sure they understand Lupus very well.

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to

You could mention it to your GP. They may want to refer you to neurology for further investigation.

in reply to Paul_Howard

mm ill mention it next time l go thank you for your reply x

puddleduck profile image
puddleduck

Hello,

Don't worry we call it brain fog, or brain freeze people effected with lupus etc have it, I am 49 years old and I get it all the time now, I can be saying a sentence and then forget what I was talking about if I do not concentrate, and I now forget the correct words to say in the sentence that once upon a time I knew backwards. I also forget peoples faces and names it can be very embarrassing so now I just apologise and explain that I have lupus among numerous other conditions relating to it, and its part of my condition now, because you have to accept once diagnosed who you are now otherwise lupus etc suffers will never move on in their lives. Don't worry your not going mad, I do not know why it happens as I use to be able just to look at somebody I know and remember all their details now I struggle with their name sometimes.

in reply to puddleduck

Hi I'm glad i'm not going mad but deffo feel like it :) thank you for your reply x

Jeffscott69 profile image
Jeffscott69

I feel for you,I have SLE,I'm 46 female,get very mixed up,my speech slurred at times and do silly things,it so frustrating and embarrassing.x

MargaretGail profile image
MargaretGail

I went through a really bad patch of this eventually confusing the CEO with my new manager. Thankfully I didn't say anything other than over enthusiastic hello's which the CEO apparently appreciated. :(

MrsMouseSJ profile image
MrsMouseSJ

Hello. This sort of thing now happens to me frequently. One morning recently I awoke assuming that I was 15 and back in my bedroom at my parents home! It was only when I became puzzled by the side the window was on that my brain 'clicked into gear' and I realised that I am: actually 45; in my marital home; had a husband next to me! Sometimes I find it funny. Often though it upsets or embarrasses me. Particularly when I use the wrong word or, like you, get confused re identities. A while back I ran up to what I thought was a friend, coming out of a well known coffee chain, kissed then hugged him very tightly and exclaimed, 'How great to see you!'. Of course, it wasn't my friend, although the bloke did look quite pleased.....

Paul's replies mention 'sticky blood' or Hughes/Antiphospholipid Syndrome (see

hughes-syndrome.org ), which I have. I'm on warfarin and it helps but, as you can see, brain fog still occurs. For me, it helps to know that many others get this too and have similar experiences. Best wishes.

in reply to MrsMouseSJ

Your reply made me smile as I've done this to so many people :). Even when i'm writing l will write what l want to say then when l read it back nothing makes scene sometimes l can't even read what I've put ...I've also noticed l have no scene of smell and taste is very limited :( x

Thank you for your reply l'm going to have a look on the link you have sent:) x

LOL, I know I shouldn't be laughing at these comments and responses, but if we can't laugh at ourselves then we will only become depressed. I haven't really experienced too many problems with identifying people that I know. But, once back home in Illinois when I only just met a woman at my church, a few minutes later after walking away from her, I didn't recognize, that she was who I had only just met a few minutes ago, that is, not until she gave me this odd look. Strangely, I don't feel embarrassed about it at all. We are going through a lot as lupus patients, not to mention what I was going through then in my life, and I didn't even know I had lupus at the time. I was just going through a lot and attributed my foggy brain to my situation at the time. LOL, even though my hair was falling out and I had all the lupus symptoms. Not to mention that I often forget how to spell words and often get homophones confused. Lupus has taught me to not think the worst about others if they come off strangely, never know what's going on in people lives. Oh well!

Freckle1000 profile image
Freckle1000

I have cognitive impairment both from lupus and a bang on the head in a car accident. I blame lupus for my trouble with word finding, & ' memory failing when multi attending ' as they put it. After my car accident I did totally loose the ability to recognise faces which was very freaky, because to compensate, if anybody smiled at me on the street etc. I would be compelled to say hello and possibly start a conversation because I thought they must know me and didn't want to be rude. I may not remember their actual faces now, but I remember the look on their faces when I did this. My facial recognition skills did come back over time, enough to get by on at least.

The good news is, neurons can grow back thank god.

But I have to agree with Paul and his advice for you to get your symptoms checked out medically.

Although we joke about brain fog, it is something that needs to be monitored and treated. Treated sometimes with low dose aspirin, sometimes warfarin, sometimes a better long term immunosuppressant regimen to make sure your lupus is always controlled.

Its important to protect your brain over the long term with SLE. Especially now we are well and truly making it to old age now.

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