To PANIC or not to PANIC that is the question - LUPUS UK


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To PANIC or not to PANIC that is the question


I'm diagnosed SLE, Discoid, Reynauds, Sjorgens and am now at the point of utter panic. Normally I can talk myself into acceptance of things but the latest has me in an utter funk. Saw GP Thursday with speech problem that comes and goes (three occasions over three weeks), either can't form the words, sometimes to such an extent I have bitten my tongue in an attempt to get out the words or the words come out pronounced OK but in a gibberish order. Hospital Friday, stroke clinic, with numerous tests culminating in CT scan. All tests negative so far for TIA (mini-stroke). Hospital will phone me next week with time for MRI scan. When I queried the need for MRI I was told I needed it to rule out Lupus going for my brain as the brain after all is an organ.

That particular thought had not occurred to me that the brain is just another organ, bearing in mind 'it' already has gone for gullet, stomach, bowels, skin, pancreas, hands and feet and knowing what I need to cope with now with these organs and limbs I am in an utter funk. I simply can't talk myself round this one at the moment.

Any one 'got the T-shirt' on this?

19 Replies

Dear Kathryn, sorry you aren't too well right now. I can understand why you would worry and it's often easy to imagine the worst case scenario, but as the other tests showed they were used to rule things out, and thankfully you haven't had a stroke/TIA's. I would hope the MRI will come back with good results for you too.

I don't know too much on the brain being affected other than it can be, and I've met people who are under neurology for the symptoms, but thinking on the positive side, many of us suffer with brain fog, mixing words up and saying the wrong words. My partner often finishes sentences for me and helps me find the missing word when my brain won't give it to my tongue.

Could this be the sign of a flare up? Or, are you more tired than usual? Just wondering if these or maybe a stressful event could have caused these things to happen. What we do know is that increased anxiety and stress will only make us feel worse overall, so please for your own good try not to worry too much, at least until you know if there's something to worry about (easier said than done I know).

Take care and best wishes for the MRI.

Dear Slowmo,

Many thanks indeed for the support, I must admit I never thought it could be an extension of brain fog. As you say, thankfully not a TIA! I love your phrase 'when my brain won't give it to my tongue', that sums up the feeling exactly!

I am not under any exceptional stress at the moment, so I don't think it's that, in the meantime I will try to take your advice and try not to worry, though I am not sure I will succeed at it!

Take care yourself too, I will let you know how the MRI turns out.


HI SLOWMO Ihave aproblem the word thing i get so angry with myself and feel so stupid.Iknow what i want to say but it comes out mixed up .

Wow...I have that too. We laugh about it and we were thinking of writing a book about the words that I come up with. Like the area between the neck and the shoulder is "shneck"....definitely some brain thing going on, but had it my whole life. So did my dad. He live a good long life. I don't believe it is a sign of stroke. I always attributed it to a kind of dyslexia. Which makes us very good at other languages. I always understood Spanish for that reason. Slowmo is right in trying to stay clam...meditate, mantra, bath with lavender, chamomile tea. I am finally learning my worrying is not going to change anything. Still learning. Trying to stay calm myself and enjoy my life.

Thank you Natura,

I shall try to stay calm, the bath in lavender sounds a good idea, that will be my plan for this evening.

Hi, I have vasculitis of the blood vessels in my brain which was detected by a MRI which I had to rule out a Tumor because I am always vomiting (weaken muscles of the gullot).

I was diagnosed in the eighties with epilepsy and I am just realising it is all to do with the lupus but try not to worry as I am always getting my words mixed up or just can't find the word I need even though I had just used it.

Dear Maureenpearl,

Thank you for the reply, I'll try not to worry, I know it can't change the outcome of the MRI.

May I ask a question, what is vasculitis of the blood vessels?

Thank you for the support.


It is inflammation of the blood vessels (swelling).

Have you seen the film "First Do No Harm"?

A ketogenic diet is used to control epilepsy.

I had a 'phase' which lasted few months where i could barely string a sentence. It was hard and very upsetting. I almost stopped talking because my words didn't make sense. Then after I became less conscious about it eventually things improved. I am told it was a phase of brain fog. I hope yours passes and you feel better soon x

Thanks behappy1, it is very upsetting I agree. Thank you for the kind wishes, I do hope it will pass soon too!! Many thanks.



It's definitely a lupus thing but I would agree with the others don't worry too much. I usually can't remember the daft words I come out with and most people have come to accept I'm nee normal anyway but one I remember from the other day as i said i was I was sleeping in the accident. I actually meant caravan, we had gone to Keilder for the weekend. On the whole I can be fine and then you get utter nonsense from me. I just laugh lets face it its all we can do.

Take care xxx

Dear Whathappned

Laughter is always good, I'll try that.

Many thanks, and you take care too.


Hi Kathin, like everyone else has said we all go through phases of this and my boss even commented on it last year. I was trying to tell my husband a story yesterday and my brain got stuck in the wrong track. I said the same incorrect thing three times in a row and got so frustrated I shouted "for Gods sake Gail shut up"! Interestingly I got my sentence out after that. :)

Dear MargaretGail

I do so hope this is a phase, hopefully the MRI will be negative and I will continue on. For me at my age (68) my fear is literally 'losing my mind' to 'it'. I will try shouting an expletive next time but I must warn my staff ahead of the event!!

Many thanks for taking the time for the reassurance. Thank you.


HI KATHIN I got it wrong by answering slowmo so sorry.

Hi Maggie54

No need to apologise, I just appreciate so much your support and the knowledge that I am not alone in getting everything so mixed up with speech.



Hi Kathin, hope the mri goes fine and you hear quickly when it is. Do keep us posted. I really hope this is just a brain fog phase and that it passes soon. x

KathinAyrshire in reply to mstr

Many thanks Mstr for the good wishes, I'm still in a panic but not as much as I was. I will post results of the MRI as soon as known.

Again, many thanks.


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