Cerebral Lupus

Hello, welcome to the site and also sorry about your wife illness.

I am not yet fully d/x with lupus so I am also sometimes in a bit of a fog as its diff for a 25 yr old to come up with such an imagine of her future life.

This is a very good site and the moderators are really nice people with lots of information and I am sure very soon they will answer to all your questions.

I can only tell you what Ive learned - that all days are different with this illness bu keep the hope and be positive...!

I can only suggest a total change in diet for your wife and go with trust towards ayurvedic medicine.

Take care:calm:

Hi Demps

I'm very sorry to hear about your wife's situation. You must be distracted with worry and anxiety about it. We will certainly help you all we can. There are a number of members here with direct experience of Central Nervous System involvement and I'm sure they will be along soon to offer support and advice. I dont have direct experience myself.

Is your wife currently on a high dose of steroids? Steroids can cause psychosis, mood swings, depression, confusion and agitation, particularly in high doses. Some people are very sensitive to them and cannot take them at all. I wonder if the steroids might be contributing to your wife's current mental state? It might be worth talking to the doctors about this possibility. Steroids have undoubtedly been a life saver for people with Lupus but they do have their down sides.

Of course the underlying disease will also be having an effect and it sounds like the sooner she is started on an immunosuppressant the better.

Please take heart Demps. There is every possibility that with the right type of treatment your wife will come out of this flare. Many people experience serious flares and need aggressive treatment to get things under control again. Lupus is very unpredictable and it can wax and wane. There is no evidence that diet has any impact on Lupus and in any event diet is part of an overall wellness plan and not something that is going to impact on a critical situation.

If you need any ongoing advice or information about medications, blood tests, symptoms. etc please do not hesitate to ask. This Forum is full of people from all over the world who have Lupus and have experienced all manners of severity with this disease.

I hope she starts turning the corner very soon. Hang in there. Your wife is still the same caring, intelligent person she was but the disease is masking this at the moment.

Take good care and let us know how she is doing
Joan:rose:

A Hopeful Heart

Hi Demps

I'm so sorry this has come to your wife and family. This site has helped me greatly for nearly 2 years, with our moderators, and the experience of others' symptoms.

My own experience of illness has been heartening in some ways, but not helped by my medical care over 30 years. A sudden violent brain operation 30 years ago, at 37, being 6 weeks alone down south in hospital, followed a remarkable recovery :wink2:and return to teaching after 5 months, and back being the mother of 4 with an ill husband unable to work.

Six years later a one off seizure, then children grown, husband gone, I continued studying, working in Papua New Guinea for 18months, flying back to Northeast Queensland with another stroke, :sad:no speech. But with perserverance I spoke, back to relief teaching, then top study. Finished -then it struck again, no specialists here, doctors had no idea, tablets etc. Then new symptoms and 2 years now slowly finding answers, re lupus/aps, etc etc, virtually lupuslike symptoms/connective tissue d/x and Plaquenil is helping slightly.

It is a very hard time for you, as it has been for me, but I am happy, content with my life, and forever hopeful, just finding specialists that can help.

Hopefully things will turn out well with you all at this time, and in the future. Best of luck. Looking forward to your posts.

A warm welcome to the forum but I am so sorry to hear how ill your wife is. It must be overwhelming and frightening, for her too.

It sounds as if she might have had lupus for some time and it has dramatically worsened and taken this especially distressing form. It sounds like what used to be called Central Nervous System lupus, CNS Lupus, nowadays called Neuro-Psychiatric lupus. This has several possible causes and a very wide possible range of symptoms and occasionally manifests itself very like psychiatric illness with for example psychotic episodes with delusions, paranoia and hallucinations. I say particularly distressing because I think we all fear losing our identity and self control most of all not to mention the stigma of mental illness whatever the cause.
However it is true that Prednisone can cause psychosis and it can be very hard for doctors to work out what is what. It's certainly hard for us to comment on what might be causing her symtpoms. If Prednisone isn't enough or is causing unacceptable side effects the immunosuppressants are very often used often in conjunction.

It can take some time, with any form of lupus, to work out what the best treatment is since the medicines are tried in order of toxicity, meaning seriousness of side effects, and individual reactions vary enormously. I belive the same is true for the psychiatric medicines that might be used.
It will be scant comfort but it is excellent that lupus has been identified as involved because the lupus is being treated. There are anecdotes of the patient being treated as if the the illness was purely psychiatric and the lupus being neglected.
I suggest you start getting copies of test results so you can start familiarising yourself with their significance. Information is empowering and helps take away the feelings of terror and powerlessness. It also helps dialogue with the doctors.
I hope her doctors are fully including you and taking time to explain the issues in simple terms. I hope too that they are lupus experts as this is a highly specialised branch of a specialised disease. If they don't have much experience there might not be too much you can do about it except to try to get a second opinion.
It is very hard as the caregiver to maintain hope and comofrt and encourage the ill person while dealing with your own fears at the same time. I think it would be foolish to think that life will ever be quite the same again but there are cases of quite remarkable recovery over time. Having any sort of lupus even when it is well controlled, always involves some degree of modification of lifestyle and often has serious effects on future plans. We do have at least one member who has suffered lupus psychosis and has benefited very much from one of the newer medications so she can now hold down a job. We have many members who lead fulfilled lives despite tremendous difficulties. But take it one step at a time ! You will need all your strength for the now of it.

Look after yourself as best you can. Take as much rest as you can and make sure you eat sensibly. i hope you have some support from family and friends.
That's all for now except we will help you to the best of our ability so come here often and let us know how things are going.

Bye for now
Clare

Thanks

Guys,

Thanks for your quick responses to my original post and sorry that I haven't been back on sooner to update you on my wife's progress. Since I was last on, my wife has been treated with azothiaprine (apologies if that's spelt wrong) and seems to be reacting well to the treatment - she has been on the drug for about a week and a half now. They are reducing her steroids as they increase the immunosuppressent and they are hopeful that they may be able to discharge her from hospital, possibly by the end of this coming week.
She is still a long way off being her 'normal' self but she hasn't had one of the really bad days for 8 consecutive days now and so I am daring to get optimistic.
It is clearly an extremely difficult disease to objectively diagnose as the majority of my wife's tests came back normal ie. MRI, CT, SPECT scans, a lumber puncture, EEG and ECG also. The only abnormality is in her blood scans and in the way she presents to the medical staff.
It is definitely true, in my experience, that you see people's true colours in times of adversity and I have realised that we have some great friends and family. I believe that this makes a real difference as I'm sure you'll agree. My wife's family have been a total nightmare which I have found very difficult to deal with as I do not want to completely cut them off, as my wife will probably need them in the future despite how bad they are being.
Anyway, the majority of the news is positive and that is how I have been trying to remain. Thanks again for your excellent work and support,

Demps

P.s. We live in Scotland

Hi Demps,

Very good to hear she is having some improvement already from the Aza, it certainly worked well for me and my brain involvement. You are right in that cerebral lupus is hard to diagnose and she must have good doctors. I had blood abnormalities but it took 5 MRI/MRA's before they actually got to see the Vasculitis active in my brain. They already knew that's what it probably was by the way I presented so thank goodness for knowledgable docs eh? Lumbar puncture, EEG etc were all negative, so presentation counts a lot with this sort of thing.

I hope she continues to do well and honestly you are wonderful as my own husband was when we were going through this. It is devastating to deal with and I am glad you are surrounded by some very caring friends. It helps a great deal doesn't it? Not everyone will understand and some people can be a nightmare as you mentioned, but when someone is this sick it can either bring out the strength and character in relatives or really show up their flaws. Concentrate on her and your support system, they are what really matters right now and kudos to you for handling this so well.

Wish her all the best from us and tell her to keep the faith. It's a hard road but the more time goes by the more she will improve. I am living testament to that.

much love
Lily

Hi,

I have been getting the run around with my Lupus. Been between an immunologist and neurologist. Issues with joint/muscle pain, chest, back, head & neck pain, muscle weakness, arm weakness, leg weakness stairs and inclines, fatigue, headaches, memory loss, brain fog, lesions on brain, inflammation throughout my system(head, chest, neck, collarbone, kidneys, liver, hips, knees, pancreas, & digestive tract.

Have had a severe bout in recent times where cerbral lupus has been considered. Still waiting formal diagnosis as consideration was given to MS also. Still waiting which is frustrating. Medication is Prednisone & Plaquenil & natural dietary supplements (lots of).

Love to hear more from others. Had to face the reality that I really do have this disease.

Diagnosed about 5 years ago but been in denial until recent flare. Hard to accept. Tired of the Dr's run around and feeling as though, all I am doing is paying lots of money and getting limited answers.

Frustrated and looking for more answers.

Love to hear how Demps wife is going now. 2 years on.

Look forward to hearing more from others.

cheers

Bel

Cerebal lupus [aka] sle

Hi

after reading your story, I had to reply, my beloved sister is in the psychiatric hospital for the second time in the last6 6 years.
She is completely psychotic the hospital keep letting her out against our wishes, she is hallucinating badly, and last night she went for a walk with her husband, and all of a sudden she screamed at him I DONT WANT TO BE WITH YOU ANYMORE, I AM GOING AWAY TO SOME OTHER PLACE. She then run off, across a field with her poor husband trying to chase after her, he called the police who found her and returned her home [alas] she in now back in the psychiatric hospital, where she has been attacked twice before by other patients. The reason she is there she has SLE Lupus and her brain is being attacked by her antibodies at the moment. The good news is myself and her husband have got her an emergency appt for the Lupus Clinic St Thomas Hosp for the 5th September. The psychiatric hospital have done nothing for her[although I handed them a letter from the Lupus Specialist] from her illness that started 6 years ago. Myself and her husband had to arrange all this ourselves, so you can imagine how angry we are with that hospital, just hope not to much damage has been done. The first time all her nervous system was being attacked as well as her brain, this time only her brain [which is very distressing seeing her like this] and the hoplessness you feel as there is nothinfg you can do for them. I dont know if your wife is attending St Thomas Lupus Clinic, but they are specialist in this illness as many drs dont know about lupus, if shes not try to get her an appt there, via her gp she really couldnt be in better hands than that. I hope this may be of some help to you and wish you and your wife all the best, as I really know what you are going through.

Regards and all the best

jenolly