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Thread: Neuropsychiatric SLE?

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    Default Neuropsychiatric SLE?

    I'm new to this site and really scared about the symptoms I've been having lately. Does anyone else suffer from "send you to the ER" headaches, depression, memory loss (big chunks of days), anxiety? I swear it feels like my brain is about to burst. Last week that happened and the next thing I know I'm coming in and out of consciousness in the hospital. Apparently I was awake and talking but have very little memory of what I said or did, tho I was told I was slightly incoherent and would literally fall asleep sitting up in mid-sentence. I'm between rheumatologists right now, but my new one can't get me in until June! I'm feeling horrible pain in head and joints right now and am terrified of having another episode like last week. Has anyone else experienced anything like this? Is the lupus affecting my brain? I have not been able to work and can barely function to take care of my family. Please help!

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    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
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    Quote Originally Posted by Eliasson View Post
    I'm new to this site and really scared about the symptoms I've been having lately. Does anyone else suffer from "send you to the ER" headaches, depression, memory loss (big chunks of days), anxiety? I swear it feels like my brain is about to burst. Last week that happened and the next thing I know I'm coming in and out of consciousness in the hospital. Apparently I was awake and talking but have very little memory of what I said or did, tho I was told I was slightly incoherent and would literally fall asleep sitting up in mid-sentence. I'm between rheumatologists right now, but my new one can't get me in until June! I'm feeling horrible pain in head and joints right now and am terrified of having another episode like last week. Has anyone else experienced anything like this? Is the lupus affecting my brain? I have not been able to work and can barely function to take care of my family. Please help!
    I am so sorry you are going through all of this. The first thing that I must say is that we are not doctors here and we can't diagnose you. I would suggest that you go see a neurologist though. Although it is rare, sometimes Lupus does affect the brain and central nervous system. I am one of those people. It is very scary and it really needs to be looked into as soon as you can. The Rhuemy will not deal with this. He/she will send you to a neuro so if you can make the appointment yourself go ahead and do it. If you need a referral I would suggest that you go to your GP and have the referral done so you can get in to see one.

    You are part of the WHL family now and we will be here with you through this
    Mari

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

    ~Winston Churchill~







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    Eliasson (03-23-2012)

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    i am sorry to hear your issues.

    i too have my lupus effect my brain.
    it is not as severe as yours, but i went to a neurologist to check it out.

    i agree with tgal......
    it is worth getting a specialist to find out what is going on.

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Elliason,

    Welcome. I'm sorry you are having to deal with all this. One thing jumped out at me after reading a couple of your posts.

    Last year, I was experiencing headaches so severe that I was ending up in the ER. The pain was just totally debilitating
    making me just crumple to the floor. The worst pain I have ever felt, and I've experienced intense pain before.

    I was diagnosed with a condition called Trigeminal Neuralgia. After a few more flare-ups, my neurologist was able to put
    me on an effective med that has at this point eliminated the problem and the pain associated with it.

    You might want to ask your Dr. or other specialist if they think T.N. might be what's causing your pain. If by chance
    you do have T.N., there are some really effective meds and treatments for it.

    I hope you find some answers soon, and get the pain under control,

    Rob

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    tgal (03-24-2012)

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    Hi and welcome.
    I agree you need to see a doctor regarding the headaches. Mine are signs I may be stroking. A neurologist appointment might be a good idea. A rheumy doesn't always has the answers we need to hear

    Nonna

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    Hi Eli,
    Welcome to WHL. As you can see already, many of us have some neurological issues with our AI diseases. Mine causes the muscles in my legs to be in constant spasm. I've also had the occasional "Lupus Migraine". Those are really miserable days!
    I hope that you can find a good neuro soon and get some answers.
    Hugs,
    Marla

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