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  • Lupus With Pseudotumor Cerebri

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    Old 01-24-2007, 09:23 AM   #1
    kare4me
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    Question Lupus With Pseudotumor Cerebri

    I just got diagnosed, my skin biopsy came back positive for lupus. I go see the dermatologist tomorrow to find out all the details and I go see the Rheumetologist on Feb 8th to find out what my treatment plan will be.
    I was first diagnosed with Pseudotumor Cerebri, which is fluid on the brain. my pressure on my brain was 360 when it should normally be around 150. I am currantly on 1000mg a day of Diamox to help reduse my pressure and 200mg of topomax aswell to help with headaches/pressure and seizures. I have vision loss in my left eye and severe headaches with the woshing sounds, dissyness, vomitting, nausea, I was wondering if there is anyone that has ever experiance Pseudotumor Cerebri with lupus. When I had my last LP done some the the protiens came back positive in the CSF, also after I had my seizure I had an EEG and it showed that my left lobe was not firing correctly so they have mentioned Lupus brain disease? Does anyone know any information about this? I would love to talk to you and get more infromaiton.
    Thanks,
    Karianne

     
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    Old 01-24-2007, 12:51 PM   #2
    zorm
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    Re: Lupus With Pseudotumor Cerebri

    hi i would like to know your whole story you said something about blood blisters on your breasts. i was diagnosed with lupus but have extrem headaches and a cist in my brain on no meds right now due to go to the neuro hospital tom hopefully for extreme pressure in my head they are looking for inflammtion in the cns i get a fluid feeling around my head the pain is so bad. i think my doc thinks i have cerebral lupus

     
    Old 01-25-2007, 08:59 AM   #3
    kare4me
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    Re: Lupus With Pseudotumor Cerebri

    Zorm,

    Well, I my story is long but the quick vertion is..I started with a severe headached that would not go away and it still hasnt and it has been 2 years.. some days are wors then others but for the most part I have had a headache for 2 years. I started to loose vision in my left eye in the summer of 05 and by the summer of 06 I had lost 25% - 30% of my vision in m y left eye my optic nerves have been swolen this whole time and I have not been able to have a dr tell my why. Finally in Dec of 2006 I woke up blind in the left eye with a severe headache that pain was overwelming. I could not move. I found my way into my opthoplogist who looked at my optic nerve again and checked my vision and I was worse so he sent me to a specialist at the university hospital that had me go for a MRI and then a Lumpar puncture. the LP showed that my pressure on my brain was to high and he thinks it has been this high for a very long time. so I have been on meds to reduce it for over a month now. He is also the one that sent me to the dermitologist to have my rash looked at becasue he did not feel that it was a rash from roseacea so I did and the biopsy came back positive for Lupus. I have started to have seizures and my right side is starting to have tremors. He thinks all of this is due to the lupus. He thinks that the problems that I have been having over the past 2 years have been because of the lupus. Lupus Brain Disease has been mentioned? I dont know I am confused. I do know I have been really mild compared to other stories that I have read and I know it could be or I could have been alot worse, I am grareful that we have been able to find out what we are dealing with right now and will be able to get things under control before it gets out of control..Fingers crossed

    If you have not heard of Pseudotumor Cerebri and you have the symptoms then it is worth an LP to check. the symptoms are severe headache, normaly top of the head and behind the eyes, most have vision imparment, papiledima (optic nerve swollen), Most are female, I am suprised that healthboards does not have a topic for Pseudotumor Cerebri it would be a very good one to have there are so many peolple that suffer from this and it is dibilitating sometimes people have to have a shunt surgically put in place to drain the fluid as of right now the meds are working for me.

    Please feel free to ask me any questions, I hope you find some answers out and all goes well at your apt. at the Neuro. keep me posted as to what they say. My wishes for you and hope you have a wondeful day.
    Many happy days,
    Karianne

     
    Old 01-25-2007, 06:56 PM   #4
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    Re: Lupus With Pseudotumor Cerebri

    what a terrible time for you. i go into neuro hospital tomoroow im not leaving with out answers this time i have been suffering severe pressure in my head for a long time now and had very questionable tests and arrogant doctors. please think of me it may help


    zoex

     
    Old 01-26-2007, 06:15 PM   #5
    dmarieok
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    Re: Lupus With Pseudotumor Cerebri

    Quote:
    Originally Posted by zorm View Post
    what a terrible time for you. i go into neuro hospital tomoroow im not leaving with out answers this time i have been suffering severe pressure in my head for a long time now and had very questionable tests and arrogant doctors. please think of me it may help


    zoex
    Zorm, we will be waiting for your return and for your answers. I now have an interest in this post because I have had such problems with migraines and both of you have mentioned headaches. The last few really bad migraines were horrible but headaches have been a part of my life almost daily for 4 years since my first severe lupus symptoms appeared. I am thinking of you both.

    Take care,

    dmarie

     
    Old 01-27-2007, 12:37 PM   #6
    kare4me
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    Re: Lupus With Pseudotumor Cerebri

    dmarie,

    have you ever had your eyes checked to see if your optic nerves are swollen at all? Have your ever had any vision changes with your headaches double vision or blurry vision with your headaches? If you have then your might want to get an apptment with a opthomologist just to get checked, and if you do have optic nerve swelling you just might have intercranial swelling to. And this can be caused by lupus. And the Pressure is what is causing the headaches and if you can get the pressure under control the headaches can be managed as well. At least this is what I have been told I have not been able to get my pressure under control yet and I have not been able to get my headaches to calm down yet. But my optic nerve is still swollen. I am on 1000mg of Diamox, 200mg of Topamax and I just started 400mg of Hydroxychloroquine. So I am in hopes that I will get some help. I go see my Rheumi on Feb 8th so see what else I need to do.

    Are you taking any medication to help you with your headaches? how are you managing your migranes? Have you tried Relpax? or even Topamax? as a preventative? I feel your pain I have had a headached for 2 years and know what you are going through. I hope you find some answers?

    Karianne

     
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