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Hello all,

Please forgive my absense. I am finding it increasingly difficult to concentrate, have problems remembering the correct words for things, and have had 2 or 3 ocassions where I have done something quite big that should have been easy to remember, but lost the memory of it. By this I mean, I have not temporarily forgotten the event only to gradually remember it later, but COMLETELY lost the memory of the event. A hole in my memory so to speak. I miss out letters and spell things incorrectly regularly and have to check every sentance. I type letters in back to front order.

My vision is blurred or difficult due to floaters. My eyesighthas deteriorated generally.

For example, my husband took me away for a whole weekend. I cannot remember it. He tried to get me to remember by repeatedly asking me about it. This made me feel very stupid. I helped a friend move some heavy stuff in her garden for a whole day. The next time I went to see her I thought we were going to do this same task because I have absolutely no memory of it. Even now ... both instances ... nothing in my head at all about these events.

I have been generally physically reasonably 'wellish', so have done bits of work, but paid for it with extreme tiredness for a few days / week or so later. I have slowed down physically and mentally in the last 12 months and am now gaining weight. I am not overly concerned about the weight gain, but do feel it shows how much less I am now doing physically.

I have good days which I enjoy and will go seeing my friends or continue to do up our house. I generally remember routes on my car journeys by the time I get to the right land marks. I could not how I was to get somewhere before I set off though.

I see my consultant annually cos am considered to have 'mild' lupus. I have been reasonably well when I have attended the consultant in the past. There is one older GP at my surgery who has had experience of one person with SLE ... an elderly lady. I rarely get to see him. Most doctors I see simply want to treat me for depression, which might be useful, but they do not seem to want to question why I am like this other than because I am depressed. They do have cause to consider depression in my case.

However, I am concerned that there may be some other cause of my reduced ability (at just about all levels) that will simply be ignored. Feeling that I am not being listened to, or that I am being ignored can make me quite low. Possibly depressed. I wonder if I have, or am developing CNS lupus, and what I should do about myself right now?

I feel I am wrapped up in chewing gum and do not know what I should be doing right now and would be grateful for some sensible pointers.

Alwin xxx
 

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Hiya Alwin.
Big hug to you:hug:

We all mostly have to cope with the general 'wooliness' of brain fog. However missing days is something else, I feel.
My gut reaction is that this needs some attention fairly sharpish and investigation. Even in depression I think this would be unusual.
The trouble is, once tagged with the D word, its far to easy for the docs to drop us in that bucket and not persue other issues.

Honestly Alwin, I don't know if you are depressed or these are CNS symptoms and you need to be seen by someone who is experienced in this weird desease.
Does your rheumy clinic have a helpline? Would you need a GP to speed up your next outpatient appointment? I think Tommies does have a helpline but I think there is sometimes a delay in the reply.

I hope others can help you better than I can but you certainly need a good doc and soon.

Please stay in touch
 

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Hello Alwin.. I am with Bigsis, you need to get this checked out, to lose such big memories which is in your short term memory is something to be investigated, remember to take along your examples like you have given on here... wish you well.
Claire XX
 

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Hi Alwin,

I have missed you friend. I am very sorry to hear your memory is worsening.

You sound depressed to me, but as you said..who would not be, if your feeling poorly, and can't remember anything. The disease itself can cause depression..I tend to forget that fact sometimes.

I think your having both depression, and quite probably some other C.N.S. issues as well. I seem to remember your suffering with migraines also? That would be an indicator also, of your brain being effected by the lupus.

You sound like me Alwin. I have C.N.S. Lupus. My memory is that bad. I can't remember days on end. Whole conversations..What I have done on any given day. Psychosis can present in such a manner also. I know your missing time..so to speak. Are you doing things..such as putting clothes in your freezer..or other things your family has picked up on? I did these odd things in addition to missing blocks of time. I was psychotic. It was from the Lupus. I still have a terrible memory..and suspect I suffered some permanent damage..but, I have not been psychotic since I started on immunotherapy, and the steroids have greatly reduced the frequency of my migraines..

I think the other's here have given you very sound advice. Such memory loss is not normal under any circumstance, and needs to be looked into by the proper professionals.

Can you see a Neurologist Alwin? A good Rheumy and a Neurologist are in order for what your dealing with..I am afraid the ordinary country dr, probably would be in way over his head in dealing with posssible C.N.S. Lupus.

I have met some dr's in E.R. here in the U.S. that are not even aware that Lupus can effect the brain..Hard to believe, but unfortunately true.

Please get back to us and let us know how you get a long friend?

Love,
Sandy
 

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Hello Alwin,

I too would recommend you ask for a referral to see a neuro.

Yes, depression is part of lupus but how much of it is reactionary and how much is caused by the disease itself is not actually clear. Studies have shown that lupus does indeed often "affect" the brain which can cause depression. Also, although the diagnosis of CNS (or neuro-psychiatric lupus) is rarer, most people have a degree of CNS involvement with lupus which can be more or less severe depending on their case. Usual manifestations are things like lupus brain "fog" but that "fog" can be more severe and may not be the only thing going on.

It needs to be checked out to make sure there's nothing sinister and with trial and error some things can be done to help. I am not "perfect" now but mentally, memory-wise, concentration wise things have improved hugely in the last couple of months. I'm hoping it stays that way.

You are certainly not alone in experiencing these kinds of symptoms and they are very distressing indeed.

:grhug:

Katharine
 

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Katherine,

Thank you for clearing up "affect vs "effect", for me. Like I said...I have C.N.S. Lupus...:lol:
 

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:rotfl: Hahaha Sandy, I assure you, it wasn't meant in that way - just affect in inverted commas :lol: I hadn't even noticed how you had spelled things.

It's a difference I always had to teach my students so I tend to remember to get it right myself, otherwise, a few years ago, I couldn't have told you one way or the other!
 

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Hi Alwin, lovely to see you posting again, although I am sorry that you are experiencing such a frightening symptom. I agree with the others that it needs checking out with a neuro or a neurophysciatrist who do certain memory tests. I also wondered if you had ever been tested for hughes syndrome? Do you take aspirin? If you test postive for the lupus anticoagulant it can cause neuro symptoms. Hughes can cause some of the symptoms you mention. Make an appt with the doc who knows a bit about sle he might be more interested and less inclined to just label everything as depression.

I wish you well and let us know how you get on.

Take care

Deb x
 

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:grhug: Hugs Alwin :grhug:

I hope that things do start looking better for you soon!

I agree with the others seeking help neurologically very soon is extemely wise. Plus you need to make your GP and Rhuematologist really aware of how bad you are in the next few days...do not put things off!

EYES - well sounds like they need some urgent attention too, please see a Optician too ...dont let these symptoms wait either. Perhaps you see a Eye specialist! If this is the case get an emergency appointment.

I'm sure all of this is not helping with depression and its so important to not let that side of things slip either.


Lots of good wishes going your way and please, please get to the relevant medical people asap!

Take care,
 

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Discussion Starter · #10 ·
Hello again Sandy and all.

I am going to take all advice and go put a note in my very large diary to make an appointment with my GP tomrrow. I think it will be worth waiting for an appointment with the doctor with most experience instead of just accepting any doctor.

I notice is it not that I am hitting the wrong keys when spelling. I am actually typing the words all wrong, and missing some letters alltogether even though I am trying to be very precise. It is clear where I have gone wrong when I see the screen. So fingers not quite doing what eyes and brain intend somewhere! Constantly having to re-type - very frustrating.

Hmmm ... definitely not quite right.

I do have Hughes and do take Aspirin. I do get migraines, but they are controoled with medication. Recently I have had a lot of stiff neck / headaches (if that makes sense) definiteyl not migraines. Feel slightly queasy and 'in a bit of a bubble' too now I come to think about it... an inch removed from reality almost. Very odd. I am listening Sandy.

Thank you all for your replies - off to find the diary before I forget!

TTFN xxxx
 

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Hi Alwin, your symptom with the keyboard I have also. I have always put it down to a hughes symptom. I can have absences and deja vu with my hughes as well. Have you taken your temp, when I am removed from reality I always find I have a really high temp of 39c!! You could be having a flare, or you could need more treatment for your hughes.

I hope your doc appt goes well.

Deb x
 

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Hi Alwin,

You have been given great advice.
I just wanted to send you some nice, soft hugs and let you know that I think of you often.:hug::grouphug2:

I hope things turn around for you soon.

Love & :grouphug2:
Lyn
 

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I agree with everyone else - please get checked out by a neuro asap! Seizures can give you this sort of amnesia sometimes. They can also cause you to feel all kinds of strange. You won't necessarily know if you've had one. Nausea and headaches frequently follow a seizure event, as does confusion, and the amnesia can be ongoing, episodic/sporadic.

I've had depression for most of my life, and have never experienced the degree of memory loss that you're describing. In fact, memory wasn't really an issue until the lupus symptoms started taking root. The only time I've had the dramatic type of memory loss that you describe was following a grand mal seizure. If there weren't people there to tell me it had happened, I would have had no idea!

Please do let us know what you find out, and what you doctor says. If they say that it's "just depression," please get a second opinion!
 
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