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Thread: Siezures

  1. #181
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    as i said before......................
    it takes a government department to really ###### things up.

    i am glad someone saw sense in the end.

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    MaryS42 (10-19-2011)

  3. #182
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    Thanks Steve what a relief I can now get him his electric wheelchair and get a car with a ramp to take the wheelchair which will make make both my life and Alans a lot easier. Also this will ease the financial pressures (thank god) unfortunately Alan has been deteriorating rapidly these past few months and with these 2 recent diagnosis of sleep apnea and steroid induced diabetes this has really rocked him and he is very low at the moment but i know he'll pick up again he always does.Thanks to everyone for all the love and support Luv M.x.

  4. #183
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    Hi All not posted for a while been very hectic due to Alans declining health.Thought id do a little update Alan not been great at all the seizures are still happening between 3 and 8 on a good day he couldnt get his chemo a few weeks ago because he had over 40 that day!!!! He has been diagnosed with sleep aponea and recently steroid induced diabetes.The good news is our social work department have finally organised some respite for me I now have a respite worker who comes in for 4hrs twice a week this is a god send! I also now have alarms all over the house and Alan has a wrist strap alarm also and we have a key safe outside the front door in case i am not around and emergency services need to gain access so things are all going in the right direction.Hope everyone is well take care M.x.

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    Hi Mary, thanks for the update. I just saw this thread and started reading. My heart and prayers for you and Alan.
    (((((((HUGS))))))))))

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    MaryS42 (11-14-2011)

  7. #185
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    i want to add my hug also.
    i think of you two often.
    i wish you some peace.
    and alan a restful day.

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    MaryS42 (11-14-2011)

  9. #186
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    If the health situation isn't getting better I am simply glad that you are getting help in other ways. My thoughts are with you always
    Mari

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

    ~Winston Churchill~







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  11. #187
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    Hi All dont know where to start we were told today that the hospital may have got it wrong with the biopsy result and he may not have Lupus afterall!!! They are testing him for a thing called shunt nephritis which apparently has most of the traits of Lupus especially on a biopsy result the only difference is with shunt nephritis the person will have an enlarged spleen and liver so they have done loads of blood tests today also blood cultures he's to go for a ct scan of his heart,liver and spleen . His kidney specialist decided to ask a proffessor to look at Alans medical notes as she was concerned that the seizures arn't giving up and also because he's been getting chemo for 4 months now and it hasn't helped at all if anything his kidney failure is worse since chemo started and she said it hasnt helped with the lupus either if it is in fact Lupus!! This proffessor has suggested that it could be this shunt nephritis and has asked for all relevant tests to be carried out basically to rule out shunt nephritis or confirm it or confirm it is definately Lupus its a nightmare.We are in complete shock to be honest as they have said if it is shunt nephritis he will need immediate open heart surgery as this is where his shunt(stent) is in his aorta (main artery in his heart).He has had 16 seizures today and im watching him fade before my eyes and i ask myself sometimes "why us" "why him" it breaks my heart to watch the deterioration in him and there's not a thing i can do to help him to ease his pain/suffering,will keep you all posted as and when the results of new tests come in . Love to all take care M.x.

  12. #188
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    you are always welcome here.

    regardless of what they call alans problems, you are a "friend of lupus sufferers"
    because you are my friend.

    it may be confusing, but if they can help alleviate alans pain, let them test.

    ialan has had it hard, if they can make his life easier, then good.

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  14. #189
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    Thanks Steve I really appreciate that we are hoping against hope that it is Lupus as we asked the consultant which one is worst and she said pray for it to be Lupus as he isn't well enough to face open heart surgery and if it is shunt nephritis the damage has already been done!!!! Anyway either way i will still be popping in now and again to see how everyone is doing and to keep you all posted on how Alan is doing. Luv M.x.

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    Hugs for you both and my prayers are with you

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    MaryS42 (11-20-2011)

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