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whats happening please?

hello fellow luppies,

as you guys know us luppies have slurred speech and difficulty focusing, mine is usually towards the end of each day or all day during a flare. but recently my speech is worse; i cannot string a sentance together without stumbling,using the words in the wrong order, forgetting a word or stopping mid sentance? im not in flare but im like this all day now.

my vision; it takes a few secounds longer to focus clearly, i mean it feels like the worlds slowed right down and i feel dizzy for a mini second? sorry its hard to explain but its weird feeling. i use eye drops at night as i wake with dry painful eyes every day.

im overdue a eye test but cannot afford it. i get alot of headaches but thats just lupus. its both symtoms that undermine me at work, i feel stupid not being able to express words/ say things without getting total brain fog. i hope this question makes sense as its taken me ages to write it. im trying to keep my job as one of my managers is very understanding but the other is trying to get rid of "dead wood" i know lupus is holding me back. i do try my hardest but the wolf will sneak up on me and make me look a fool :(

im not brainy but im not thick either yet i come across as that as i cannot join in converstions as the words dont flow,sorry im not making sense am i?

anyone else like me?

a BIG heartfelt thankyou to all who replied to my last blog. you all are amazing,you took the time to show you cared,thankyou xxx

9 Replies

I don't have an answer but I would suggest a visit to your GP for some neurological checks. Good luck x


Hi, agree you should prob have neuro check..understand what you are saying, it is so frustrating when you want to join in and say your bit but either cant get the words out or they come out all wrong and especially in the work situation where people dont always know, undastand or want to undastand what we are trying to deal with. I would certainly speak to either Gp, rheumy or both about what is happening at the moment especially if it is more noticeable than has been .do let us know how you get on. Big hugs xx


Oh I feel for you,I have this too,I used to enjoy the banter of being with everyone but my confidence has gone as I stumble with what I want to express. I enjoyed quizzes etc but don't realise I've answered incorrectly and then feel silly.i used to belong to our local team. Not sure if it's not being able to process the question or what.Anyway I'm waiting to see my rheumy as I was advised it could be hughes syndrome or vascalitis. On the other hand it could just be my old age ! Hope you are able to get an appt to sort it


Hi caninecrazy

I can't as yet give you any answers, but I'm on course to see a neurologist for this kind of thing, I've been trying to get my flares under control for 2 years now, and on steriods, hydroxy

and more recently gabbapentin. The flares seemed to be continual and I started to develop more neuro symptoms, I ended up on the stroke ward in April. I have facial droop as well as changes in speech in pitch and tone and a slowness - it takes a huge amount of effort to articulate my self at times and I can forget what I was trying to say half way though because of the effort it takes to speak and think. I also have noise intolerance when this happens. I have no answers for you yet but feel whatever is happening has progressed because my flares weren't under control, I was put on gabbapentin to help this and after a few dosage adjustments find this plus an increase if steroids has helped. I have just had a very rare 2 weeks of feeling almost normal!! It's really nice to have clarity of thought, I like having my wits about me! I'm just starting to flare atm (ladies monthly) so trying to take it a bit easier - I've had to take myself somewhere minus noise, to type this so I can think! I had all the usual symptoms before this progressed neurologically - bad joint pain, night sweats, hair loss ulcers, bakers cysts, facial ptosis right eye, livedo reticularis - then started having numbness pins and needles in my arms and feet etc I knew it was getting worse but there was such long gaps between my appts. I'm still waiting for neurology appt to come through so as yet can't really tell you why it's all been happening, but maybe think you should mention to your rheumy and ask to see a neuro also - I'm not holding my breath that I'm going to be seen anytime soon but if I do get any answers - I will certainly share!! Well wishes x


If you need an eye-test but cannot afford it, it may be worth filling in an HC1 form. You can pick up a form at most pharmacies or request one online. The form asks for a lot of information about your financial situation and if you are found to be struggling, they will allow you free prescriptions, dentistry, opticians and travel expenditure for hospital appointments. It is worth filling in just in case.


I get this brain fog and all the things you say you get at times it is very embarrassing when talking to a stranger especially a delivery man at the door as I say some stupid things. I had a MRI scan a few years ago and was told I have (I am now trying to remember) I know it's something to do with the blood vessels in my brain. (just got it) It's vasculitis of the brain.

This is me most days, friends and families are used to me talking like this, I might want to say pass me the book that's on the shelf but instead I have to say something like this (pass me the big brown thing that's heavy and you open it out to look inside, it has white pages. Look on the wooden thing with wide slots, now we are all getting frustrated with each other.

There are days when I surprise myself by remembering everything. If I am tired the memory is worst or when I have a virus. I used to be a nurse and was very good at my job and now I feel like I know nothing.


Hi caninecrazy...sorry no answer for you only sympathy as i have this most of the time these days. I had to take early retirement as i worked in a library and of course information vital. I did have MRI and was found to have a "patch" on the brain...nothing else done or offered so it is what it is. I do get very stressed at being unable to find a name or description of something, and like most of us rely on friends and family not to laugh too much!!!

As i said before am sorry no answer for you only sympathy and understanding.

I wish you well xx


Hi caninecrazy

I have this too. I have had it for years now. I always have eye check ups and was diagnosed with empty sella syndrome years back. The headaches are terrible and the memory loss makes it worse. I forget words mid sentence and totally forget the trail of conversation. I do understand what you mean and it has led me to dwell in a shell of my own apart from my family who now understand. Get yourself checked. I hope you Will get to the bottom of it. Take care and keep on keeping on!


Hoi caninecrazy

Again no answers...but pleased others are the same!

I find myself talking a load of rubbish!...this lunch time a friend remarked on my ability to talk about something totally opposite to thread of the conversation! I have to stick to routines else end up up standing in the middle of the room thinking allsorts!

Hugs xx


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