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Discussion Starter · #1 ·
Oh my gosh. Will I ever live this down? I was meeting two friends for lunch today. One of them is a new friend, but I've spent several hours with her over the past couple of months on a few different occasions. I got to the restaurant, stood in the doorway, looked right at my friend who had already arrived and was sitting at a table, and didn't recognize her! After a minute of me standing there waiting she came over to me. THEN I recognized her. OMG, OMG, OMG. Did I feel like a fool. What do you say at a time like that? True, we're not long-time friends, but anyone else would have recognized her under the same circumstances. I have this face blindness that is absolutely horrendous. I'll still recognize people I've known for a long time even if I haven't seen them in awhile, but anyone who I don't see on a regular basis that is relatively new to me, forget it. Or, should I say, forget them. I do!! GEEZE!:blush::blush:
 

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Hi Jesse,

Exactly the same thing happened to me last week. A woman I have known for years and I didn't recognise her. It was only after half an hour talking and someone else saying her name that I could name her. I knew her and was rather distressed trying to remember who she was...

I frequently can't recognise people and names and context are a terrible problem.

hugs to you :hug:

Katharine
 

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Discussion Starter · #3 ·
Thanks Katherine. I'm still trying to decide if it's the lupus, Sjogren's or the drugs that are causing all this trouble. Have you been able to pin down what's at the root of your memory problems?

This has the potential to be a huge problem in my life. I am NOT a happy camper.
 

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Well for me it is definitely lupus in some way. When I first went on Imuran and for many months after I got my brain back to a great extent even if I still had trouble with people from years back who I recognised (but couldn't remember names and things like that).

Unfortunately recently my bloods are showing more disease actvity again and this has conincided with headaches and severe memory problems. Including not remembering what side of the road to drive on one day for about thirty seconds (may not sound long but 30 seconds is ages in a car!).

As to what exactly it is...the rheumy and neuro say maybe lupus vasculitis, maybe linked to lupus disease activity, maybe APS (which we don't really know if I have...). Of course, each would suggest a different treatment option. For the moment it is "wait and see" which is not sitting well with me as if my brain goes I can't work the little that I was doing. I need my little income supplement and also if you say no to a client more than once in a while, you lose them (I'm a translator).

sorry, I really can't help more. I think that no-one really knows the answer and even when they do, it is very difficult to actually treat effectively.

Katharine
 

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Discussion Starter · #5 ·
Thanks Katherine. No one seemed to suggest to you that it was the medication. I guess I'll just blame it on lupus. It's better than just admitting to being stupid! If I have to have lupus I'm going to get something out of it!
 

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No, I know it's not the meds as I have had this problem for years. Years before I finally got diagnosis and the meds improved it rather a lot.

Of course, I guess that depends what meds people are on and how they're affected by them but for me I know it's not the meds.

Katharine
 

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Hi Jessie

Brain fog can be a bit of a problem at times. Mine is names at the moment. I was stood with 2 colleagues the other day. both I have worked with for over 2 years. I was looking at one and could I get her name out... could I heck, well I felt like a total numpty...

I think they are getting used to me now and my calling everything a thingumy bob or a wotsit! I think I need them to tattoo their names on their forehead or something.

look after yourself!

Claire
 

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Ditto :)

Its got to be lupus

Ive done it an awful lot:)

It is very embarrassing.......but what can one do:rolleyes:

The best way to handle it would be to laugh it off with some quick remark or joke and even quickly move on and talk about something else...
but who does that when they are cringing with embarressment.

I think us lupies could write a great story book about our experiences.:)

Hope she is still your friend:p
 

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I think in my case it is senile dementia not lupus, but anyway, my memory and word muddling is awful these days.

We are doing a project in my art class and the focus or theme is " Juxtaposition ". We were talking as a group about our plans, sources and reference materials. One of my oh so clever references was Juxtaposition written in Greek characters that I was going to use as collage and pattern basis. I held it up and of course every asked what on earth it was. " Oh", said I blithely," it is Transvestite in Greek. Oops I mean Juxtaposition "
No wonder I get funny looks and people steer clear of me. Of course everybody fell about laughing including myself and there were lots of cracks about what my mistake said about my real interests
:rotfl:

All the same my mistakes really embarrrass me and are no cause of amusement. I have to say that I rely on pity for help these days, no longer my sexiness
Clare
 

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Discussion Starter · #10 ·
Yes, I'm tempted to play the pity card too. I think (no, I KNOW) I'd rather have people say "Oh, what a shame her disease causes her such problems" than "Boy is she an idiot!" or "How can she not know my name? What the heck is wrong with her anyway?"

Pity is the lesser of all the evils I guess.

BTW Clare, my mom died of Alzheimer's and an aunt and a cousin also had it so I worry about senile dementia too. At this point I think it's the lupus, but neither scenario gives me much comfort.
 

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Hello Jesse

My mother spend a few years in residential care suffering from vascular dementia which is same difference. Luckily she didn't know where she was
Although she was well into her 80's when the affliction became obvious looking back I realise there were signs of it starting at least a decade earlier that we just put down to getting on. I console myself by thinking that it is 'OK' still so long as I realise I am making mistakes, getting confused or not understanding.
On a practical note, there is a risk in assuming it is 'just the lupus' playing up.. There are other possible causes for cognitive problems which can be treated. One is B12 deficiency which can in severe cases cause dementia like symptoms. It is astonishing how often this simple and readily treated problem is not picked up even in very ill people who are seeing doctors regularly. The increasing physical weakness is also put down to the lupus. Other causes of not being with it are worry anxiety and depression, plain exhaustion and being preoccupied in other things, doing too much. Sometimes people find that are better when the disease is really well controlled and report improvement from Plaquenil and a daily aspirin

I also think that acknowledging difficulties and learning coping strategies is healthy. I have trained myself to recap a phone conversation ( other important ones too especially doc appointment) as it comes to a close and make notes. The notebooks and pencils are right by the phones. This cuts down the number of occasions when I can't remember what the call was about and what needs doing as a result. It also gives me time to think over what was said and ask other questions if need be.

:)
Clare
 

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Discussion Starter · #12 ·
Thanks Clare. I was tested for B-12 when I was first dx'd nearly a year and one-half ago but not since. I guess I should ask for another test. It can't hurt. Thanks for the reminder that other things can cause foggy brain.

I also started keeping a notepad by every phone to take notes. I just haven't been consistent about doing it. I forget! LOL. But I'll get into the habit because I really do think it's a good idea.
 

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Jesse88;522780 said:
Oh my gosh. Will I ever live this down? I was meeting two friends for lunch today. One of them is a new friend, but I've spent several hours with her over the past couple of months on a few different occasions. I got to the restaurant, stood in the doorway, looked right at my friend who had already arrived and was sitting at a table, and didn't recognize her! After a minute of me standing there waiting she came over to me. THEN I recognized her. OMG, OMG, OMG. Did I feel like a fool. What do you say at a time like that? True, we're not long-time friends, but anyone else would have recognized her under the same circumstances. I have this face blindness that is absolutely horrendous. I'll still recognize people I've known for a long time even if I haven't seen them in awhile, but anyone who I don't see on a regular basis that is relatively new to me, forget it. Or, should I say, forget them. I do!! GEEZE!:blush::blush:

I'm so glad you mentioned this! I've had this for years now but only got dx with lupus at start of this year. It is really embarrasing but i either just laugh it off or say "i'm not good with remembering faces" that usually does the trick. Or my bf will say "you remember so and so DON'T you" then i can just reply "of course!" whilst thinking "remember their name this time!!!!!"

So do we think this is a lupus thing? I never really thought about it much..
 

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With me, its just constructing sentences in the correct order (which can be difficult - I'm a teacher!!!) Its just started happening and I just try to laugh it off, wouldn't like to stop remembering faces - would make my job very difficult indeed!!!!
 

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Discussion Starter · #15 ·
Based on what I've read, it does seem to be a lupus thing. I would agree with that based on my own embarrassing experiences. I've never been good with names but used to be good with faces at least. Then a few years ago that changed. I've only been recently diagnosed with lupus but I've had symptoms for several years so I do see a cause-and-effect.
 
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