[2utopian2]

Hello,

I am looking for someone to talk to that has the above combination of illnesses. It has become apparent to me that between my love's Rheumatologist, Neurologist and Psychiatrist none of them seem very certain as to the causes of her various symptoms.

For example, I have asked Claudia (my fiance) to take something out of the freezer and she can't find it, even though when I open the freezer it is the first thing I see. Claudia has become very paranoid as well; thinking that someone is trying to get in the house or that our cat is outside. The neurologist thinks that it is more of a psychiatric problem whereas the psychiatrist thinks that it is caused by the lupus.

I feel like I am the only one that is trying to put everything together. Claudia's mental abilities have been on the decline but no one seems to know why. Is it the strokes or the lupus or a mental problem?

They do not seem to be as worried as I am. She cries nearly every day, but does not know why she is crying.

And for the record: I hate Lupus! I hate Strokes!

I love Claudia.

Confused Kevin.

 

[samour]

Hi Kevin,

I am a mother of a 18 year old daughter that has CNS Lupus that is affecting her brain. She was a A student and very athletic. She started showing minor symptoms in Grade 8 and they really started to show in Grade 11. She finished her year but her marks dropped so much. They thought she had mild lupus as none of the bldwk was significant. She started having hallucinations minor she would see things move or jump out a wall. She would also have auditory hallucinations, someone calling her name, nothing threating as it can be in lupus of the brain if not treated or not responding to treatement.

She was diagnosed in May, July she had seizures and they found a massive blood clot to the sagital sinus in her brain. She also had a small stoke, with left sided weakness. Her APS test has been negative 3 times, but her new adult neuo said they can have false negatives. She in on a injectable heparin and will be on a thinner for the rest of her life.
She has balance, speech, and paranoid behavior for some time till they had her lupus under better controll. The high doses of steroids didn't work so she was on chemo 7 mths the last one was Feb 6th. She is on medication to help with some of her moods but only a mild dose and was told she may not need them once she is under better control.

She sees a psyc. just to talk about how she is feeling and what she is going through. Her doctor has alerted Rheum several times that she was in need of greater controll of her lupus, or is getting worse.

It is a scrary time to go through. If your significant other is having trouble she need help by the many doctors that help in treating this disease.

I hope you will ask me any question you have
Sharon

 

[samour]

One more thing Kevin,

My daughters Rheum thought her psyc, problems, lip pursing, memory problems,balance, speech, were from her stroke, they told us a month later, as she was getting worse, they made a mistake and thought these symptoms were from the stroke, but now knew it was being caused from the lupus.

My daughter is so much better now, she still has her days, but is taking 2 grade 12 classes, has to work harder. Still has some memory problems and other lupus symptoms. The troubling behavior before the chemo has disappeared.

I would be wondering if your other is not suffering from the lupus rather than the stroke.

Sharon

 

[2utopian2]

Thank you so much Sharon!

It seems to me that Claudia's behaviour is more lupus related rather than stroke related. I realize that, just because your daughter's doctors came to the conclusion that her symptoms were actually lupus related does not necessarily mean that it is the same with Claudia, but it is just good hear from someone who has to deal with multiple diagnoses.

Take care,

Kevin

 

[Lily]

Hi Kevin,

Whilst I don't have APS I do have SLE which involves my brain. I suffered several TIA's just prior to confirmation of the Vasculitis. I also suffered hallucinations and some degree of paranoia. I'm happy to say that since finding the right medication regime (this took some time and lots of liasing and appt's with my Lupus Doc and Neuro) things are much better now.

Lupus affecting the brain can cause hallucinations and paranoia. However if she is on Prednisone then some or all of it could be also caused by that also. This is where her doctors need to brainstorm between themselves to sort that out, it's essential because with tweaking of meds things can be a whole lot better.

I do feel for you it must be horrible standing on the outside looking in and feelings so helpless. My husband related that to me , how heartbreaking it was to him. He felt that all he could do was accompany me to the docs and reinforce the effect this was having on me and us as a family. This was a great help as it turned out, there were things I didnt remember or wasnt aware of where he could fill in the gaps and it gave them a much better all round picture of what was going on so they could tailor my treatment to suit. Once I was a bit better he still accompanied me but remained in the waiting room (I'm stubborn and wanted to fly solo on this as soon as I was able :hehe: )

I just wonder what medications/treatments your fiancee is on, maybe there is room for improvement there? Please don't hesitate to ask about anything, we are here to help if we can, and also give you hope that things can and will improve with the right meds, good doctors and some support for both of you.

I hope the operation goes well and do let us know how you are both doing.

love
Lily