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Thread: lupus in brain?

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    Question lupus in brain?

    hello everyone ,
    my Rheumy is sending me for MRI because he things" Lupus is in my brain" his words.
    If there is Lupus in my brain like he says, what do they do about it? give me stronger treatment?
    ??
    thank you

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    Quote Originally Posted by Twinmama View Post
    hello everyone ,
    my Rheumy is sending me for MRI because he things" Lupus is in my brain" his words.
    If there is Lupus in my brain like he says, what do they do about it? give me stronger treatment?
    ??
    thank you

    Hi Twinmama,

    May I ask what symptoms made the doctor think that you may have CNS involvement ( brain issues) going on? It will be easier to answer your questions if we know which symptoms you are having
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    the main one would be my ongoing migraines and the fact that NOTHING helps the pain not even Maxalt RPD . It's been going on for 7 months. I have regular headaches 5 days a week and migrane 3 times a week(for a day or 2).He said that the fact that only prednisone makes me feel better makes him think that. They have sent me for some blood tests something abou "sticky blood" as well. I had some red spots on my body. they would come and go.it wasn't a rash. and maybe my psychotic episodes(which I don't want to talk about much) I don't really know. I have a long list of symptoms,like my face and scalp hurts all the time, everyday and a LOT.etc.
    I don't make sense of these things that are happening, but the doctor puts them together and suspects something else is going on..
    ???

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    Hi Twinmama,

    I hope you have'nt got Lupus affecting your brain but by the affects your getting and also that rash sounds identical to a member on the site
    LUVMYFLOWERS and how it's affecting her brain is through vasculitis and she's been on a right coctail of medication's and at the moment she's on presidone to help, it might be worth getting intouch with Diane but i really hope it's not gone that far.

    Very best of Luck xxx
    Last edited by Peridot20_Gem; 05-04-2011 at 02:35 PM.

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    Yeah, I think it is a good thing that you are getting looked at. I have CNS involvement and it is really is important that you find out as quickly impossible so you can get on the right meds to keep in in control. "Sticky Blood" is also something that many of us have and the official name is "Hughes Syndrome" or APS. It just means that your blood had a tendency to clot too easily and that could be very dangerous. If you are not already taking an asprin every day please talk to your doctor about that. It is an easy way to lower the chances of having issues with the APS

    Please keep us posted on the results of your tests and never forget that we are here for you!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Hello everyone, this is my first post here. I am interested in finding out about what kinds of symptoms a person has when one has a psychotic episode with CNS lupus. I have many symptoms described above including the headaches, migraines that last for days with aura. I also get numbness and tingling sensations and have had double vision vertigo. I am not asking for you to open up about your experiences with this,,just if anyone knows of what an example of a psychotic episode would be. I believe I may have had that as well.

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    Hi Debrodg4. Welcome to WHL! Many of the symptoms you touched upon are/can be part of CNS Lupus even without psychotic episodes. The psychotic episode happen when you are no longer able to judge reality or begin to have hallucinations. The psychotic behaviors can be from CNS Lupus or, for some, it is a symptom of the medications, especially our steroids.

    Headaches, migraines, numbness and tingling and eye problems with vertigo are all things that can be just part of Lupus in General. Very few people have extreme CNS involvement. Below is a bit of information about CNS as found on the UK Lupus site. It is brief but gets the information across.

    (Reading this makes me wonder if my distrust of the government can be blamed on my CNS involvement! LOL)


    Some lupus patients may demonstrate symptoms of psychosis.
    Psychosis is defined as an inability to judge reality, marked by disordered thinking & bizarre ideas, often including delusions & hallucinations.
    It usually results in an inability to carry out the ordinary demands of living.

    About 10-15% of lupus patients will display acute psychosis during the course of their disease.

    Most psychotic episodes occur with CNS vasculitis, but others occur as a result of steroid therapy, water intoxication with low blood levels of sodium, seizures, central hyperventilation, or antimalarial therapy.

    It is managed with corticosteroids, & antipsychotic preparations.



    Please note that the things that actually help our Lupus, steroids and antimalarials are the same things that can cause psychotic episodes that are NOT directly related to the disease.
    Last edited by tgal; 05-05-2011 at 01:00 PM.
    Mari

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    ~Winston Churchill~







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    Thank you for explaining about the psychosis involvement in CNS lupus. I understand more clearly now what is meant by that. I did not realize that the steroids or palquenil could cause this as well. Thanks again

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    Debradg4,

    If you are having signs of CNS involvement you really have to have it looked at by a doctor. CNS involvement is nothing to play around with as it can cause so many issues. CNS involvement can cause long term damage if left untreated.

    Never forget that we are here for you as long as you need us!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    I have my MRI scheduled for this month. I'll keep you posted

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