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Thread: Siezures

  1. #51
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    Hello Mary,

    Seeing his psycologist will do him the world of good especially if he's built a bond between he/she and he'll most likely pour out his emotions which will do him good.

    I've been where Alan is wanting to sort your life out then wanting to die and at the end of the day i'm still here fighting, not to good with the Lupus i will admit but i have my hubby to consider who's very close to me, so it's just carrying on in life and handling what hits you.

    It will take Alan awhile refering the Lupus and seizure's but he will get his head around it with good help/support and love off yourself.

    Love Terry xxx

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  3. #52
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    Hi Mary,

    When you have time can you update we please on Alan..i just hope he's not been to bad today and your ok besides.

    Have they actually said what they think it is from yesterday and have they given you a proper date out of tomorrow or tuesday when the other top specialist's move in on Alan and hopefully he'll be sorted out more quickly to ease the pressure he's under besides yourself.

    All my love Terry xxxxx

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  5. #53
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    Hi Terry neurologists are coming tomorrow no specific time yet but but based on the lumbar puncture results they said it isn't CNS Vasculitus they said high dose steroids can cause seizures,they said Mycophenolate can cause seizures and lastly because he has a stent in his heart (from his accident ) they said his stent can cause seizures but all in they have no clue as to whats causing them so we are pinning all hopes on neurologists having an answer will keep you informed when I hear anything else.Thankyou so much for all your love and support i have enjoyed our chats thanks Mary.x.

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    Hello Mary,

    Thanks for getting back and letting us know besides myself.

    Well if they've said 3 things can cause it, they don't really know it's best to leave it to the top specialists now as they'll do extensive tests to find out the proper cause. I hope Alan's ok besides yourself also and get plenty of rest.

    When i started having seizure's my dad worried that much he lost a stone and half in a week, yet it never had the same affect on my mom, i surpose it's according to the person in general.

    As soon as you know something with the other specialist's please get back when you can and let we know, i hope you don't think i'm pestering you but seizures are so serious and with what Alan's gone through i just hope it's down to nothing to bad.

    All my love to you both Terry xxxxxxxx

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  9. #55
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    Just letting you know that I am thinking of both of you. I haven't been posting much but I have been reading. You are in my thoughts
    Mari

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

    ~Winston Churchill~







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  11. #56
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    Hi All not much to tell really neurologist came to see us today she doesn't think its epilepsy however she said she wont have any answers till they have done the EEG tomorrow.They have taken him off the diazepam and are going to try and induce a seizure while he is having the EEG as apparently this will give them the best picture of whats going on so its all a matter of waiting now till tomorrow will keep you all posted with results etc as and when we get them.Hope you are all well love M.x.

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    Hello Mary,

    It's still nice to let we know how Alan's going although there's not much to report and i thank you for that...yes he needs to be on nothing really to take a good EEG because like i mentioned Diazipam (Valium) shuts down the electricity in the cells, as i'll be having one before i go to bed as they help keep my mind stable with the seizures and if Alan was on them they'd get no proper readings showing.
    I do hope they do two EEG's one while he's sleeping and one awake because the activity of his brain can work either way if they are seizures.

    Both of you takecare and all my dearest love to you both Terry xxxxxx

    P.S I'll wait for you to update we again and a large thanks again.

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    Hi Terry and everyone else im afraid i dont really have very much news Alan had an induced seizure while having an EEG today and although we havn't had a formal diagnosis the neurologist who performed the test said its definately not epilepsy and she thinks its simply stress brought on by the Lupus diagnosis.NOT HAPPY WITH THAT CONCLUSION!!!!!!!! This is more than stress believe me because if its just stress I should be having seizures, strokes or a heart attack lol!!!!! no-one is more stressed than me right now with the frustration of doctors being so closed minded that they won't even contemplate Lupus . Ok RANT over for another while hope everyone is keeping well and will continue to update on how we are doing.Love to all M.x.

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  17. #59
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    Hello Mary,

    As soon as i sign in after my tea i always look first to see how Alan's going and if you've replyed.

    Mary mind my language but stress my a.se and if i was his wife like yourself and by what you've said he's gone through i would'nt be happy with the conclusion also. Everything you've said about stress causes what you've said...if i get stressed out i fit and by the discription of what you've seen with Alan they're seizures and these are surposed to be top specialist's dealing with him.
    They should be contemplating Lupus because for a start off mine started at 18 and i thought they'd came out the blue and then to be told 3yrs back the lupus had caused them being born with it.

    Mary just one EEG won't find nothing and they do have more tests besides that, unless they just want a quick option out and what then put Alan on wrong meds hoping the best will do, this just ain't on.

    I hope your keeping fine besides stress which you will get with worry because they're playing GOD with your hubby's life.

    I'm the same as ususal mary the same aches and pains that go with Lupus but life goes on.

    Love to you both and please keep letting us know. Terry xxxx

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    Hi Terry first of all I can't thank you enough you have been my pillar of strength honestly if it wasn't for our chats on here I'd be going stir crazy by now.I am absolutely livid by the whole "STRESS" diagnosis no human can thrash about the way Alan has been doing and come up with "stress" but because of this they have decided to stop the phenytoin tomorrow and I just know as soon as they stop that he will start having violent seizures again I know its going to happen they stopped his diazepam yesterday and he has been shaking(kind of like watching someone who has parkinsons) so no-one is going to tell me his whole body is shaking constantly due to stress!!!!! Once again I will keep you posted on developments tomorrow I don't know if I've told you this but Alan is 6ft 4inches tall and right now he looks like a frightened little boy and it scares the S**T out of me and him.Thanks once again love & hugs M.x.

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