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Thread: Sezior and CNS

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    Default Sezior and CNS

    HI guys.
    So I had a what can be called a mega flair, just over two weeks ago and I ended up having a seizure. I am still in the hospital. I have now added Keppra and Cellcept to my menu of meds that I take daily. I have had 2 MRIs one right after the seizure and one this monday. The nuero said the "mess" went from a 7 to a 2 or 3..so thats good news. I am still having problems...I am having a hard time differentiate between medication sideeffects, and nuero problems. Sometimes i'm feeling ok, then others i'm not. I am having short term memory problems..feeling tingily in diff body parts inc. my head....balance issues... dizzy..Plus not to mention i'm completley juiced on steriods so I feel weird from that too. I guess i'd just like to hear from any of you that have CNS. This is a whole new ball game for me..this lupus has hit a whole new level and i'm freaked out. Here are my meds i'm on...someone please tell me this is going to get better and all this medication is gonna get this undercontrol. THanks guys. XOXO

    Synthroid .88 ALso:lovanox shot while in the hosp, prilosec, and clariton
    Plaqulinil 200 mg
    Cellcept 2000 mg
    Keppra 500 mg
    Prednisone 60 mg ( it was just cut to that today..I was on 600mg daily salumedrol for the past week)
    Thanks for listening.

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    I keep trying to post to this thread but things are not coming out the way I want them to and I end up closing out without hitting send. I am going to try this one more time.

    CNS Involvement does change everything. I am not saying that people without it are better off I am simply saying that it is a completely different "type" of lupus as in, emotionally and mentally you have to change your way of looking at things.

    The bad news is that the symptoms you are having can be from the CNS involvement, the seizures or the meds (I know, not what you wanted to hear). The good news is that when your doctors get the meds all worked out and you find the ones that help you the symptoms may very well even out. Do your best to try and not stress over this. Stress is going to make it worse. You are in the hospital and the doctors are working on it. I know the seizures freak you out right now but they are kind of the thing you get used to first. You have to make some adjustments at home (no taking baths while alone, no driving etc) but it kind of becomes second nature to you and those around you until they get worked out.

    I don't know if you are on, or applying for, disability but if you are you shouldn't have any trouble now. Uncontrolled seizures is one of the things on the SSD list of immediate approval disabilities. As things begin to calm down for you I will be glad to talk to you about that.

    It's going to be OK. It may not feel like it right now but it is. Just like with all the problems associated with Lupus it takes awhile but things will settle down. Until then we are here for you (I really hope this makes sense)
    Mari

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

    ~Winston Churchill~







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    Thank you for the reply. It does make sense.. I am working on just trying to relax and let the Drs do their job...it's just been a long few weeks of ups and downs and trying to figure it out and i'm tired of my body and mind feeling like this. Im so sad and scared I know thats not helping. I really HATE this

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    i am thinking of you constantly.

    enjoy the hospital time (easier said than done i know)

    relax when possible.

    at least this all happened in hospital.

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    I know this may sound silly, bit I have always felt safer at the hospital during my hypocalciemia seizures. I can't moved during them and knowing that someone is there with me helps.

    Feeling safe helps to relax, I hope you can, I will be thinking about you

    nonna

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    Hi Sarah,
    Sorry your haveing such a hard time and so sick right now, Im also in a major flair and hit the rong button also before im through typeing.
    I also have CNS Involvement. Dr's think it is sjogrens that has caused the cns involvement but it could be lupus or plain cns vasculitis there realy not sure without a brain biopsy and im just
    not wanting to go there unless life of death situation. I can tell you my symtoms and situation.

    I also have severe short term memory problems, balance issues every day, use a cane to walk and balance,frontlobal dementia becuse of so manny lesions on the brain, dizziness, tremmors,
    numbness in legs,feet hands arms and face, head, becuse of damaged nerves caused by the cns brain dammage that controls the blood flow to the nerves in my legs and face and hands.
    The meds they have me on to slow the cns vasculitis, lupus and sjogrens now is
    prednsone 20mg a day and imuran 100mg a day and was on prolosec but thay cahnged it for a med called dexilant for my stomach where the pred has just cooked it and mouth.
    Along with lots of other meds, I just saw my neuro and rummy becuse of new severe dizzy spells
    and severe flareing, and legs and but and back very numb. neuro wanted to up my imuran but my rummy said i didnt weigh enough to up imuran to 150mg, both say in in a severe flair of lupus ,sjogrens, and cns vasculitis and my meds arent working right now, but say the imuran takes 3 to 6 monthe to start working and ive been on it for almost 5 monthe now.
    Both dr's say even though im on meds i will still have bad flairs of the diseases from time to time. So my rummy is giveing me a little more time for the imuram and pred to start working and if it dosent work to slow the cns vasculitis then he wants to go to either salumedrol or
    methoexate witch i have diabetes also and uping the pred makes my sugar also go up
    so i dont know how that is gonna work either . Im just in a wait and see mode , and
    so hopeing this imuran and pred starts working.
    cns involvement for me has taken my ability to drive, do bills, handle money at times i get very confused, sence of judgement, and so many more other things i use to take for granted that now
    are impossible or i have learned new ways to do them. So ive surley had to regroup and and
    take a deep breath and accept a lot of things and different ways of doing them that i didnt think i would have to do at this age in life.
    Mostly becuse it took dr's so many years to figure out what was going on with me , and by the time i went to the er with numbness and the mri found all the lesions on my brain a lot of the dammage had already been done. But if dr's find it soon enough they can get you on meds to prevent a lot of the dammage and get the cns involvement under comtrol.
    And sounds like your doctors are on the ball to getting you better !! And im sure hopeing your new meds work and get you to feeling a lot better, and get your flair under control!!
    Im here any time you need to talk, Sending you Big hug's !!!!! And wishing you the best of luck
    that your new med's work!!!! ~Diane~
    ~Where Hope Grow's, Miracle's Blossom~
    Diagnosed,
    (CNS) Vasculitis, Lupus, Neuro-Behcet's, Raynaud's, Fibromyalgia, Diabetes, Earley M.S., Buerger's Syndrome.

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    Hi Sarah,

    Thanks for checking in here - I was wondering how things were. I'm sorry they aren't great yet but I'm so glad you are being cared for at the hospital right now.

    Sandy
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    Quote Originally Posted by Sarah2010 View Post
    HI guys.
    So I had a what can be called a mega flair, just over two weeks ago and I ended up having a seizure. I am still in the hospital. I have now added Keppra and Cellcept to my menu of meds that I take daily. I have had 2 MRIs one right after the seizure and one this monday. The nuero said the "mess" went from a 7 to a 2 or 3..so thats good news. I am still having problems...I am having a hard time differentiate between medication sideeffects, and nuero problems. Sometimes i'm feeling ok, then others i'm not. I am having short term memory problems..feeling tingily in diff body parts inc. my head....balance issues... dizzy..Plus not to mention i'm completley juiced on steriods so I feel weird from that too. I guess i'd just like to hear from any of you that have CNS. This is a whole new ball game for me..this lupus has hit a whole new level and i'm freaked out. Here are my meds i'm on...someone please tell me this is going to get better and all this medication is gonna get this undercontrol. THanks guys. XOXO

    Synthroid .88 ALso:lovanox shot while in the hosp, prilosec, and clariton
    Plaqulinil 200 mg
    Cellcept 2000 mg
    Keppra 500 mg
    Prednisone 60 mg ( it was just cut to that today..I was on 600mg daily salumedrol for the past week)
    Thanks for listening.
    Hi Sarah,
    Sorry to hear your in hospital, i'm like you it's my 2nd home refering seizure's but Lupus can cause seizure's so your flair was really bad to trigger a seizure off. I started having them at 14 and they really took control of my life at 18 and i'm now 42.
    I'm on Keppra and they put me on them when the drug first hit the market and i was worried about taking it but i take 750mg of a morning and night besides aload of other's but keppra as been ok with me no bad side affects or weight gain.
    How your lupus as been bad, the seizure will mess about with your central nervous system and they've kept you in to check up on all this and to find out which one as affected you the most because the stronger the seizure nerve cells to the brain are killed and it affects the nerves more and that's why they've done 2 MRI's already.
    My fits have done alot with me my nervous system it's been damaged besides having lupus i have loss of memory that goes on for weeks, it affects your spinal cord, so i highly suggest you resting, it can cause a form of twitching to parts of the body but if you feel like the seizure meds are causing problems mention to the doctor's while they're trying to sort you out a tablet called kemedrin it's brilliant for stopping bad side affects.

    Sarah i wish you all the best and keep we updated please.

    Hugs & Kisses Terri xxx
    Last edited by Peridot20_Gem; 04-11-2011 at 08:37 AM.

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    Sarah abit of extra info to help regarding the Central nervous system.

    The central nervous system (CNS) is the part of the nervous system that integrates the information that it receives from, and coordinates the activity of, all parts of the bodies of bilaterian animals—that is, all multicellular animals except sponges and radially symmetric animals such as jellyfish. It contains the majority of the nervous system and consists of the brain and the spinal cord. Some classifications also include the retina and the cranial nerves in the CNS. Together with the peripheral nervous system, it has a fundamental role in the control of behavior. The CNS is contained within the dorsal cavity, with the brain in the cranial cavity and the spinal cord in the spinal cavity. In vertebrates, the brain is protected by the skull, while the spinal cord is protected by the vertebrae, and both are enclosed in the meninges.[1]

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