Does anyone have cerebral lupus ?

[lupylucy13]

I have recently had problems with confusion,headaches and difficulty remembering things, waiting to see neurologist.

[Kyphi]

Hi there, I've only just signed up to the site so I hope my post is helpful. I have been diagnosed with SLE for 4 years now and although I have not had a diagnosis of cerebral lupus I do think I have it. I have very weird dizzy episodes (dizzy is the best word but its not really dizziness), I have terrible memory loss but then it disappears. I have also developed some kind of word blindness where I can't spell simple words or I don't know how to string a sentence. I get headaches occasionally. I have had an MRI scan that was inconclusive.

I have mentioned all these symptoms to my consultant but they don't seem concerned (perhaps because Im on warfarin now for DVTs).

So you're not alone - its horrid I know, but you will get to see a specialist in the field.

[lupylucy13 in reply to Kyphi]

Hi Kyphi, thanks for your reply. I have been diagnosed 18 years now and always told i had very mild lupus.It has not felt mild to me and i have had cerebral symptoms from the beginining.I have always been told it wasn't lupus and made to feel i was a hypochondriac. I only hope now some docs might listen.I have already had a couple of MRI S but was told it was age changes (I am 53).Hopefully might get some answers.Hope you are keeping well.

Lupylucy

[kb281 in reply to lupylucy13]

Hi LupyLucy,really interested in your blog because I have just had a weird attack this week a dizzy turn affecting my speech and sight,and just thought it was down to stress etc

.I read only last week about Cerebal Lupus and when I went to Docs he sent me straight to TIA clinic at Queens hospital and I was kept in for MRI CCT<Heart echograph etc...They were going to give me a lumber punch but I said only if it was necessary I didnt fancy having that done if I didnt need it

.

I am 52 and also have "Mild Lupus" which I suffer fatigue and speech problems.

So it turned out they were looking to see if it was Cerebal Lupus but fortunately it wasn't although there was something on the MRI scan.

Ihave been let out now with a probable TIA mini stroke diagnosis.

I get terrible brain fog ad memory problems which are getting worse.I feel like I am acomplete air head sometimes!!

Glad to know that I am not on my own,I am a teaching assistant who covers classes so can't really be havng dizzy spells whilst teaching!

I too get worse when tired and stressed which is the nature of my job!I am off school now till after Easter,can;t drive for 4 weeks so have to rest and take it easy.Which I find very hard !However I will keep looking on this site for some research.Armed with info is very useful -if only I could remember it!

So nice to hear from other loopy loos like myself!

[lupylucy13 in reply to kb281]

Hi kb281,

Nice to hear from you , I hope your symptoms have settled down.It sounds as though you have had a good check up. I am waiting to see a neurologist next month. I get a lot of headaches and numbness in my face and recently got a bit confused and forgetful and have difficulty finding words. I had an MRI last year which showed something but i was told it wasn't important.From other replies i realise that cerebral lupus is hard to diagnose even with M.R.I.

I also had a bad head injury 6 months ago and that complicates things. I haven't been allowed to drive for the past 6 months and don't know when i will get back to it since i have had another episode of neuro symptoms.

Like you I work and I am concerned about my job.Make sure you have regular breaks and try not to get too stressed (easier said than done ! ) Enjoy the Easter holidays and take time to relax.

Would be nice to keep in touch if you like, take care,

Lupylucy

[kb281 in reply to kb281]

Hi LupyLucy!

Thanks for your reply.It really is comforting knowing there are others just like yourself and understand what you are going through.

It sounds like you are just like me in many ways!

I am mad I cant drive for 4 weeks, let alone 6 months! Poor you!

Hope you have a supportive family?

My husband is fantastic and I have two grown up daughters who have just suddenly realised that Mum is

not the superwoman she used to be.

How frustrating is it for us??? Not easy to swallow is it?

I think when I go back to work I am going to have a "return to work "phase".To be honest up until now I have tried to hide my loopiness. Not sure I can hide it anymore!

I have taken full advantage of the break and just ordered a load of craft stuff to keep me out of mischief!

I suppose I could do a bit of housework but...I need some therapeutic time to create!Well that's my excuse!

Anyway Love to keep in touch

Karen (kb281)

[kb281 in reply to Kyphi]

Hi Kyhpi

Welcome! I think we all suffer with weird symptoms and never quite know if they are part of the Loopyness!Last weeek I collapsed and had a mini TIA ans they thought Imay have had cerebal Lupus.Thankfully after many tests MRI,CCT etc they

said my scan was clear after seeing something on the MRI.

I also get my words mixed up,am terribly forgetful and cant think straight most of the time.I blame everything on the loopyness.That is why I didnt call an ambulance last week when I should have!

Well hope to see you on here again.All the best to you

Karen

[sebitha]

Hello Lucy

I am wondering how you sleep? As the fatigue we get with the Lupus, for me at least causes the symptoms you mention.

How are your iron levels? As my experience has been that it can be tough to keep them within normal levels, which has caused me to have weak legs and dizzy spells, along with being really tired on waking up, having headaches that are too sore to sleep more, then being so tired that everything is difficult. Even the simple things like getting breakfast are tough when I am tired and confused.

My GP has given me 10mg of Amitriptyline, which has made a huge difference.

Is there anything else, like asthma that could be making your Lupus symptoms worse?

Try not to worry about the worst case scenario, I know that's easier said than done, But hold onto the fact that Lupus is complex and it could be the fatigue, while it must be scary to be waiting to see the neurologist, its good that you will have an expert opinion. In my opinion it is better to deal with the fact, as nasty as they may be, as then at least the appropriate action can be taken.

Best wishes. Let us know how you get on.

[lupylucy13 in reply to sebitha]

Hi Sebitha,

I go throught phases sometimes good sometimes bad. I had Amitryptyline many years ago but I didn't like it made me feel i had a dry mouth all the time. Just hoping I might get some answers soon, like you I prefer to know the facts and then deal with it . Thanks for the advice,Keep Well,

Lupy lucy

[daisyd]

Hi Lucy

I have. Mild Lupus and Hughes syndrome (it's on healthunlocked site too) sticky blood, Antiphospholipid syndrome all the same condition different names.

Hughes was the reason for my pregnancy losses, heart attack, Dvt, memory fog, memory loss, word muddling, sentences coming out back to front.

I didn't get migraine but a lot do

I am now on Warfarin range to be around 3.5 has improved the fog, memory still a problem though.if my inr drops much below this the symptoms get worse. ( some people are on anticoagulant injections)

Dizziness years ago I suffered with really bad dizziness, I was put on betahistine which is for menizures ? Spelling disease, which I don't have, I can't express how much difference this has made to the dizziness.

I had been under a neurologist for about 10 years without diagnoses of Hughes, for some reason some neurologists don't believe in Hughes syndrome, that's another story.

I was treated for epilepsy which I have as well, caused I also think by Hughes

If you think you might have Hughes syndrome collect all the information from the Hughes web site and take it to yor Gp as a Haematologist, Rheumatologist are more up to date with this condition

I have been diagnosed with Sneddons syndrome as well, not a nice condition is extremly rare, treatment Warfarin as well.

Good luck, hope you get the right treatment

[lupylucy13 in reply to daisyd]

Hi Dasyd,

Thanks for the reply, sounds like you have had a hard time putting it mildly ! I have coped with my lupus and worked as a Nurse for many years but i just can't keep pushing any more. I got a bit muddled at work which was very embarassing as i have always been a good Nurse. Not sure if I will be able to return to work and will just need to wait and see.I am sure I have been tested for sticky blood and i don't have it.

I do get dizzy quite a lot and have low blood pressure. I hope you are keeping well,

Kind Regards,

Lupylucy

[Mops]

Hi Lupylucy.

Loving your name ! This time last year I was told I had a type of lupus that affects the brain .id ended up in a neurology ITU having had a small stroke - in the UK we call it TIA and they found I'd had 7 of them over a a year or so .they also diagnosed APS. Luckily here in Paris can see your specialists almost immediately so my Rhuemie saw me the day I was discharged . He put me on a drug called Previscan - does the same job as warfarin but its much newer - this has now been changed to a drug called Pradaxa which needs no monitoring.

I suffer from similar symptoms to Kyphi along with visual disturbance very poor shorterm memory and a weird "swimming " feeling in my head from time to time. Although a shock I was really pleased that this was diagnosed as I have a direct line into the neurology unit close by.

So Lucy be brave and if you get this diagnosis look on the bright side - you can be as daft as you like and blame on the lupus

Try keeping a symptom diary before you meet your neurologist as well that way you are not having to rely on your dodgy memory

The sun is shining here the sky is blue and the snow looks like powdered diamonds - have a happy day xx

[lupylucy13 in reply to Mops]

Hi Mops,

My Small dog is called Lucy that's why I use the name and it goes well with Lupy lol ! Lucky you living in Paris ! Sounds like France has a good Medical system compared to the U.K. Hoping to get some answers soon as I have had a hard time with doctors not listening to me and believing my symptoms. We have had a light sprinkling of snow here in Glasgow this week but today it is grey and raining.

Thanks for your reply, you cheered me up !

Best Wishes,

Lupy lucy

[lucy-may]

Hi lucy, I have sle and had an MRI Scan 2 weeks ago for a brain scan, as l was suffering the same symtoms as your self, terrible memory bad headache, twitching unable to recognise words and spelling became difficult at times giddiness, on and of.

My results came back inconclusive, l was told by my rheumy they were unsure of the results. Which has left me high and dry, as if you get a diagnosis you can get on with and get treated, but without it nothing. Still it may turn out the other way that l don't have this, so l will try not to worry about it.

So try not to worry, the future will take care of its self. Best wishes to you.

Lucymay x x

[lupylucy13 in reply to lucy-may]

Hi Lucy may,

I realise now that cerebral lupus is difficult to diagnose. My last M.R.I. showed some changes wich looked like vasculitis but the wouldn't saw it was my lupus. I will be very surprised if it's not but will have to wait and see.I would prefer to be getting some treatment if it is.I have been on Plaquenil for 19 years and I don't think it does much. The poor memory is really bad just hope I can still get back to work. Thanks for the info,

Best Wishes,

Lupylucy

[Herb]

cerebral lupus is not such a rare symptom of lupus, its basically lupus attacking the brain. It can be diagnosed by an experienced rhematologist. It can exist on its own or with hughes (antiphospholipid) syndrome. Antiphospholipid/Hughes syndrome needs to be treated with anticogaulants if it affects the brain. It is diagnosed on the basis of symptoms, blood tests and mri scan. Neurologists can treat it too and they are good at excluding other potential diagnoses.

[lupylucy13 in reply to Herb]

Thanks herb, don't think i have sticky blood i just want to make sure I am getting the proper treatment as I have been having problems for years. I had a bad fall a few months ago and I ended up in a coma for a couple of days.I think i went back to work too soon and my brain is complaining ! Hoping to get my neuro appointment soon.

Thanks for the info, Best Wishes Lupy lucy

[Herb]

Have you had an MRI scan and neuropsychological testing?

Your rheumatologist should be able to arrange these.

Cerebral lupus is treated with the strongest lupus drugs, such as cyclophosphamide. It can also be cerebral vasculitis. Prednisolone is often used for this.

[lupylucy13 in reply to Herb]

I had 2 MRIs last year, the first when my face went numb and was told I had some white fuzzy areas which may be vasculitis, ageing but nothing too worrying. I fell down stairs and had a head injury and was in hospital with bad concussion. I also had high temp and had another then. My rheumatologist thinks something else was going onbut not much showed on the MRI.I was pushed to go back to work too soon and became unwell.Waiting to see the neurologist.Will let you know what happens.I just want to get the right treatment as I have been struggling at work.Thanks for your info

[DaleDiva]

I have CNS Lupus and have many of the symptoms described. I am under the joint care of a Rheumy and Neuro. I had a MRI that showed white plaques but was mainly diagnosed by excluding other neurological illnesses and clinical expertise. I start Mycophenylate next week

[lupylucy13 in reply to DaleDiva]

Do you work ? My biggest dread is that i might have to give up work and i am on my own but i am trying not to worry ,easier said than done ! What is Mycophenylate ? I hope your treatment goes well and you don't have too many side effects.Let me know how it goes. Good luck !

[kb281 in reply to lupylucy13]

Hi Lupylucy,

I am also worried about not being able to cope with my high pressured job when I go back after Easter.I am lucky I have a great husband but we can't afford me to give up work or go part time due to big mortgage.

I work in a Primary school so it is pressure all the time.

Where do you work?

keep in touch?

[lupylucy13]

Hi Kb281,

I work as a nurse and I am a clinical nurse specialist for people with breast cancer, I enjoy my job but it can be very hectic at times and a bit stressful.Having problems with my memory is not good as I need to have my brain in top form ! I suspect i will have to either reduce my hours or give up work but it all depends on what the Neurologist says. Like you I still have a mortgage so i am a bit worried. I am now trying to take life as it comes because worrying won't change anything and might make my lupus worse.

I can imagine working with children must be quite busy and stressful too especially when they are naughty ! At least you get good holidays but i expect you need them lol !

Just been out for lunch with my brother , he hates any kind of illness so I can't talk to him about my concerns and my sister is much the same .I have a good friend that i talk to and she is a great help.I have noticed that some of my friends aren't around much when I really could do with a visit but i think it's just that they are so busy.

I noticed you mentioned you like doing crafts, what crafts do you do? I make cards and i enjoy designing cards for friends and family. I keep ordering masses of card making stuff and I have a spare room full of stuff ! I am off to make a butterfly mobile to brighten up my craft room. I am 53 going on 13 lol !

Hope you are feeling better , Happy Easter !

Lupylucy

[Sher78]

I have cns lupus. Rheumy will not confirm this (although he IS very happy 4 me 2 b on anti-psyches 2 reduce my 'episodes') as all lab tests, blood etc have come back 'inconclusive', eventhough psych, neuro & GP all strongly believe that it may not b cerebral as SUCH, but it has definitely affected my cns (although I DO have APS which can bollock up u're head too).

I have ALWAYS suffered with all u have mentioned but 2 years ago things went crazy with me experiencing severe mood swings, having audio & visual hallucinations, extreme paranoia, feeling detached from my body, extreme outbursts of anger, hypermania, feeling things touching/crawling on my skin, the list goes on.

Basically, I went from being a very intelligent, organised, level-headed young woman 2 a complete & utter mental case.

Believe me when I say, headaches, nausea, dizziness, vertigo, insomnia, confusion, memory problems, hand-eye co-ordination r all 'normal' lupus/APS problems (it is believed that a certain level of neurological invovement is quite normal).

Don't get me wrong, I'm not saying u DEFINITELY don't have cerebral lupus, I am just saying that what u describe r very common problems lupus/APS can cause. Sure, some lupoids don't get ALL those problems & some have them worse than others & of course any new symptom experienced by u SHOULD b checked out with u're Rheumy/GP but cerebral lupus is not exactly common. I'd b more inclined 2 start worrying if u start having conversations with non-existent entities or suddenly start behaving like a whirling dervish & plotting the destruction of the universe (basically totally going off on 1) but lupus affects us all differently & is a very strange illness.

Take a little look at the following links:

thelupussite.com/fact5.html

emedicinehealth.com/lupus_s...

[lupylucy13 in reply to Sher78]

Thanks for your reply Sher 78 , you obviously have a great sense of humour which keeps you going. I will just have to wait and see what happens when i see the Neurologist but I feel there is definately something strange going on with my brain ! My friends at work noticed i was behaving a bit oddly and I had to go off sick . I am a Nurse and I like to know exactly what is going on and then I'll deal with it. I have had several serious illnesses and each time they couldn't tell me exactly what was wrong but this time I am going to tell them I want every test possible so i get some answers.

Sounds like you have had a hell of a time , I hope you are keeping well , Bye Lupylucy

[Sher78 in reply to lupylucy13]

'Lupus Fog' as they call it can b pretty savage at times & can suddenly come from nowhere but as u so rightly say, u know u're own body, mind etc & know when something aint right.The problem is with being in the medical profession u'reself, sometimes we can know a little too much 4 our own good

Make sure u keep us updated & let us know how u get on. I really hope they can provide u with some solid answers. Sometimes being stuck in limbo is far worse than anything else x