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Thread: CNS lupus?

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    Default CNS lupus?

    I have been having some new symptoms: dizziness, headaches, memory problems, fogginess. My doc wants me to get an MRI of my brain and a neuropsych test done, but I'm not really sure what that consists of. Has anyone had this test done? Does it measure memory and concentration?

    She said she may also do a spinal tap. How exactly do they decide if someone has CNS lupus?

    I'm totally new at this....All my symptoms in the past have been in my joints, skin, lungs and heart. Any advice or info would be very much appreciated!

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    Is there anyone out there who can share their experience or knowledge about CNS lupus?

    I'm trying not to freak out here, but yesterday my opthalmologist told me that I have no vision in the lower half of my right eye. I'm a graphic designer, and I really kinda need my eyes.....

    I am perpetually dizzy with this looming migraine in the back of my head just waiting to pounce. I actually walked into the wall twice at work on Tuesday. It's not easy to try to look nonchalant after doing that.

    Oh yes, and then I do all kinds of weird things. Like put the same item three times on my shopping list. Not be able to finish a sentence because I can't remember what I was talking about. In a business meeting, no less.

    Today I was in a meeting with my boss and the whole room was swimming and she sounded like she was talking at me from the end of a far away tunnel and my vision was all covered in a haze. Needless to say, it's very hard to stay focused on the point when this is happening, even when I'm working VERY hard to do so. And to top it all off, the topic was whether I am well enough to continue working. Or not.

    Sorry, my frustration has reached a high water mark right now. What in the world is happening to me?

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    Default CNS Lupus

    Makie,
    I am so sorry to hear about your trouble. It must be horribly frightening and frustrating to boot. I have never experienced CNS symptoms to the degree that you are describing, and I do not know of anyone who has. I am hoping SaySusie will hop in with her vast expanse of knowledge base and give you some facts.
    It is possible that your symptoms are at least partially due to inflammation, and if that is the case, there are medications to reduce and control that. What are you on now? When are you scheduled for the MRI and the neuropsych referral?
    Have you tried going to the Mayo Clinic Web site and looking up CNS Lupus? I would do that, just to get some general idea about your problem. Of course, that site and this one are for information, but neither we nor they can give you the diagnosis, plan, and prognosis specifically for you.
    I cannot say that I have suffered what you are, but my hands started swelling very badly - in fact my right hand looked like a baseball glove - and I became so fatigued I could barely walk at all during my last months working. I was an RN, and using my hands and walking were my most basic tools (besides thinking and listening, of course). I know I am lucky to have gotten disability (finally), but the loss of my work hurts tremendously. I hope this doesn't happen to you, but if it does, please know we are here for you, and you will find a way to cope.
    Please update us on how you are doing and how your tests come out.

    Cyber hugs and prayers,
    Susan

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    Have you had your blood pressure checked when this happens?

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    Thank you Susan, for your kind words and encouragement. I went to see my internist yesterday and he was alarmed by the loss of vision that the optometrist found earlier this week. He is suspecting CNS vasculitis and I will be having the brain MRI on Monday. They are still in the process of scheduling the neuropsych test, but it should be next week.

    I'm doing okay, just trying to stay as calm as possible and trying to ride the episodes of dizziness. I still have a persistent headache and vision problems but I can handle it until we figure out what's going on. I do have an excellent lupus doc if I need to get some more aggressive treatment than I am already on.

    I'm currently on 20 mg of methotrexate, 10 mg of prednisone, and 400 mg of plaquenil a day. I was indeed having a pretty severe episode of dizziness when I was at the internist and my blood pressure was normal when they checked it.

    We'll see what happens....everyone seems to think it's a problem with my brain or central nervous system.

    Thank you again!

    Mari Anna

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    Marianna -

    How did this all turn out? Was your med team able to come up with a real diagnosis for you? How is your vision? I hope things are ok with you. Please let us know how you are...
    "What a friend we have in Jesus, all our sins and griefs to bear. What a privilege to carry everything to Him in prayer." (Old Rugged Cross)

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