HI Can I just start by saying They thought I had Giant cell arteritis. Was treated with high dose steriods for that felt better .But then coming of them .I struggled I had previously had really sore head felt as thought it was swelling and pressure and hair loss and breakage brittle No my ANA test postive I am finally getting treated.
I have in my it my brain nervous system .Previously had been having stroke like symptoms but it got better and I just dealt with it . Basically pleaded with everyone doc to help .Think they all thought I was a hypochondriac. Until my blood test has not caught up .Been going on for 18mts
To see neurologist and get lung test as very breathless .I also have Raynauds in my arms all my face including nose .Breathless weakness down right side .I also feel on side of my face is totally white at times as no blood getting through to my skin .Blood pressure now all over the place really high to really low . Started on all the stuff most of you guys will be on .
My life for 10wks in bed on in chair .I used to walk 12 miles a day most days. But this last 18mths has been hell .
Please any help to make me see a road out of it .I am mentally and physically done .Would be great .Sorry so long winded .
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suitcase1
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You really have had a tough time. I think it is important they have diagnosed you.
I have mild CNS involvement with UCTD. Your symptoms will likely warrant much stronger medications. I hope it will reassure you that there are medications that help and with CNS lupus my sense is they use very expensive drugs like Rituximab if needed, and they are proving effective.
People here with CNS lupus will probably share their stories and offer hope.
What medications did they put you on to start? The neurologist will be able to offer medications like anti-depressants and anti-epileptics that sort of quiet the brain. It helps me quite a bit - no more stroke-like episodes.
Thank you very much for reply I will get a list of meds to you asap .Just got a bigger pile yesterday .I appreciate you getting back to me .Just having a wee off day
Hi Kay having a bit clearer day .Got the med list in front of me now .
They have me on prednisolone ,hydoxychloroquine ,Nifedipine amitriptyline aspirin along with more tummy and vitamins meds .Blood pressure still high even on meds .
But hoping that might have been made worse just with stress.So hopefully now once I change docs and get a handle on things I will be able to get to a better less stressful place .
The brain fog and extreme tiredness and stroke like symptoms weakness down one side coming and going has been the worst . But to see neurologist in 2wks .So see what he has to say
Glad you are a bit better. It is clear your doctors are taking you very seriously. What dose of prednisone are you on?
I think you initially had some sort of vasculitis and then developed more lupus symptoms. Try not to feel like a “hypochondriac” as you mentioned. That is so far from the truth that it is ridiculous. Unfortunately, these neuro things can start out vague. It sounds like they treated you fast with the high dose steroids, right?
I am glad others posted about experiences with CNS lupus. Many have done well. The neurologist will have input and maybe work on reducing steroids. I think you can rest assured you will be given whatever powerful medications you need.
Deep breaths. Feel free to ask questions. Seek support.
Hi Kay Yes I was on high dose steriods 65mg at the beginning of Jan .It was only when I started to come off them it all flared up again .They did a MRI scan and was clear in march but that was wks after heavy duty steroids.Then they started to get me off them .. I was quite happy tbh to be told I didn't have it ..But then it just went bottoms up .They were insisting it was burning scalp .
But tbh my dermatologist did flag up possible lupus to them mths ago.I have only became aware of that on Friday. Test were done .I don't know the time line of when they knew.But was weeks ago .But it seems they have just come to light !! But I was put on 30mg steriods now and the hydoxychloroquine but understand that can take weeks to get into your system .
I feel a bit better .But still weak just no energy.Head is a bit better but dip in and out of fog ..Right side weak including face .It feels as though it's sliding and losing volume. But not noticeably but I can feel it!
Think even the stress of dealing with it is all coming out now .So that's just adding to the exhaustion.
But few days rest meds and chill time will make a difference.
It has been like building a jigsaw and all the pieces are coming together now .So very grateful I have found you all .
I know I can get to a better place might not be perfect but I will find contentment in simply things Even getting a daily shower 😁
😀 Hang in there. Yes, coming together for you and your doctors. I am sure they tested you for everything, including lupus, that presents with the type of vasculitis you presented with.
Thank you kindly for your reply .I have been prescribed it .That is fantastic news about your friend .And it gives me hope that the same will come my way in time .So relieved to see on here the good outcomes and most of all the advice from the ppl that have suffered. Kind regards
Hi Suitcase. I've got SLE and spent about 2-3 years trying to get help for a Neural flare - same reaction - was diagnosed with Somatisisation/ hypochondria. Finally got treatment earlier this year - been blasted with high dose pred and mycophenolate - that's apparently good at crossing the blood brain barrier.
I found out a few weeks ago that the treatment has halted the neurological damage - and I can at last see a light at the end the tunnel. I've been left with balance- co - ordination and eye sight problems and some annoying cognitive glitches. But with neurological damage there's a healing phase in the two years post 'event' - and- there can even be more minor healing up to five years ( or more ) afterwards. So please don't give up hope.
I'm absolutely exhausted and traumatised just from the battle to get treatment - but don't underestimate the ability of high dose treatments / Prednisolone to make you feel warped - exausted and out of whack - which might be making you feel TEMPORARILY worse than the underlying condition itself.
But hold strong - these treatments will pay off in the end.
For me - now things are settling - although I have some new disability- I'm starting to feel like my old normal self again - at least mentally and energy wise which is making a huge difference. I can also feel my brain kicking in again after such a long period of it being in a kind of grinding neuro fog wilderness. This has made the battle worth it.
Please don't under estimate you're ability to adapt to anything. It's always devastating- shocking and horrific at first - but over time I've found the mind has a way of gradually adapting and getting used to what lupus can take from you.
Things might alter to a new normal, but I actually believe we're hardwired for this kind of adaption.
This is so upsetting, Freckle. What symptoms were you reporting that they dismissed?
These neurological issues are known to be really hard, but that does not make it acceptable to disregard them. I had pretty mild stuff and my rheumatologist would use the term “constitutional” which did later get changed to low level CNS involvement. As my friend Carl says, “Always listen to the patient. “
I am so sorry it took this amount to treat you. What finally convinced them?!
I noticed a slowing of cognition - just more of a challenge to use the brain. generally.
I had mild loss of co - ordination and mild weakness - numbness on the left side of the body - also a heap of autonomic - peripheral nerve problems - put down to POTs. The pots put down to deconditioning and ' anxiety '
When I performed the hold you're hand out wide and touch your nose on and off quickly - I failed miserably. I also couldn't quite walk strait without concentrating - again - I was putting on.
I was accused of exadurating this - and in another consultation - being too stupid to understand my own symptoms.
This was - followed by a thesis added to my medical record regarding trauma and Somatisisation. Its my belief this neuro department had a reseach project on hand - and the nature of my medical record full of moronic assumptions about me didn't give me a hope.
An MRI at the time showed white matter damage - but put down to age - even though I questioned this when they ' really ' quickly showed me the scan.
It was my Rheumatologist that ordered another one MRI - with demyelenisation protocols and contrast. I had to accuse myself of having had Neuro psychiatric symptoms in the past - which isn't the language I'd use to describe myself - but it was their language - - so I used it. This phrase was definately the line that tipped her into doing another scan.
About 8 months before she was aware of cognitive problems but reacted by reducing my maintenance dose of pred - which was the absolute wrong thing to do. It added to the neuro flare and damage I have now.
In her defence- I was sero negative for the first time in my life and thought to be in a lovely remmision.
I did tell her repeatedly that have a serious level illness and wasn't comfortable reducing the pred.
All the symptoms I originally presented with are now recognised as being due to white matter damage from SLE. The peripheral - pots stuff too.
I nearly lost my Kidneys in 2015 due to the same idiocy. Two years of - it's anxiety etc.
Its like living in a surreal nightmare. - because the attitudes just keep on keeping on.
My god ! The incompetence is unbelievable that you have had reading all that .!! I actually had got to a point of ending my life because I thought I had lost the plot !! To be ill and nobody believes you has done loads of damage to my mind .After being a fit and active person why would anyone make up they are ill..But now I will fight I have had times where I had to dig deep and got through it .But illness and brain fog .Is taking it's toll.truly sorry that you have had to go through it Xx
Boy oh boy, I cannot believe this. I’m went through similar but what scares me is how wide spread this gaslighting and how frequent. I wish I was well enough to campaign. Tx #endfndfarce
Oh another one ..My God 😥 .I cannot believe it ! Why us ...most ppl go to the docs get help if they can help them ..but not start an 18mt campaign of proving we are ill..The ones that they have ignored are us .At present in bed and not much chance of campaigning for anything .Its beyond belief. Much love MercyT Xx
Oh your words are so gratefully received. To have gone through the same thing as me .I really thought I had lost the plot .After having never being ill in my life other than over active thyroid 30 yrs ago then to under active 3 yrs ago .But apart from that nothing ..I.have had 3 big bereavements to deal with .So they put it down to stress .Even after the fact the last one was 4 yrs ago .And I knew myself I had got over it ..There has been monumental mistakes in my care .So going to lodge complaints procedure asap .Blood test show I am having a flare .He had done test and forgot he did them .Only with me being persistent did I get an answer .He told me someone else had done the test .I now have received a letter saying it was him and he forgot ..So going to get change of doc .I have lost confidence in him .I know he is old and was due to retire but no one has taken his place .The dermatologist I saw 12 wks ago said lupus should looked at ! He has also said that in the letter ..But to hear you have had a battle the same as me really fills me both with sadness and hope I am so sad to know you have had to go through the same ..I know I've gone from very active person to being in bed or chair .I am pleased to hear you are still making progress and you sound positive about handling all that has been thrown at you .I hope that you keep getting stronger and feel that you are getting stronger in body and mind .I hope I can fight through it and gather my mind enough to get to a better place .This brain fog is the hardest thing to have ..Everything I need to do is so much harder .I at least have an appointment with neurologist in 2 wks time .I'll see what he says .Thank you so much for your words and reply .Xxxxxmuch love Miriam
Must admit - chasing down blood tests and getting other things in order on behalf of Doctors is pretty much a lot of how I spend my time. It all adds to the trauma. Its hard to accept the unfairness of what's happened to us.
I really hope you're Neuro appointment go's well - and you'll let us know how It all went.
Sending you as much support and love as can be done via the internet.
Had my neurologist appointment. His words as soon as I told him my original symptoms were in his opinion crainial vasculitis..Where I had lost control of my BP Sometimes so low which might have caused a lot of the cognitive things As well it was going really high that was causing the stroke like symptoms..Well now I have vasculitis in a lot of places and Raynauds and face tighting gut issues lung damage. He also said he was sorry they had failed me .Going with all the blood test that magically appeared to indicate lupus like connective tissue disease but now I am pretty sure might be more like sclerderma. Because scar on forehead and that area lost all my hair and mask like face very tight and discoloured both with Raynauds on my nose and very white sides .Tightness on my skin on my arms legs gut probs ..But I think the nipfedpine been put on helping both the Raynauds and BP so my mind has been clearer only had one episode. He said if they got on top of whatever autoimmune I have the neuro stuff should get better .so🤞Changed rhumi and I should have spoke with my GP this week.But changed till later in the month. But seeing new rhumi in 3 wks so I hope they can help get me out of bed and get better on top of it .I hope you are coping and best wishes and thank you for support Xx
As bad as things are - it sounds like all the pieces of the jigsaw are coming together and you're getting closer to an answer, especially with a positive reaction to medication. I hope the Rheumatologist can give you the definitive diagnosis you need and you can get on with the business of recovering.
Yes you are right. The sooner I get the right diagnosis the better .I just have to let the past go and look forward for now .Buckle down do the best I can .Hope new rheumatologist is better to deal with and listen to me 🤞I have also booked private rheumatologist who works and has work with great ppl in a hospital that specifically treats sclerosis.Lupus and sclerosis is her speciality. Its not until Oct .But feel at least I've a plan in place if my new rheumatologist doesn't work out .
Hope you are having better days my friend and thank you for your kind reply .This site is a god send X
Aw thank you so much .It's so good to know I am not alone in this...but so sad you know!! 😘 .It's a nightmare that never seems to end EH !Spent all morning trying to get help and information .When the brain doesn't want to help it is so much harder. Isn't it strange writing these words to a stranger that totally gets it !..Your words andthe support on this group have gave me hope out of this mess .Those virtual hugs mean the world ..Sending you loads back Xx 💕💕💕💕💕💕💕
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