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  1. Thread: Hi all Im back

    by MaryS42
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    2,059

    Hi Steve no it doesn't change the outcome this...

    Hi Steve no it doesn't change the outcome this disease there is no cure for either as i said they will treat it with chemo and steroids and the end result will be complete renal failure and with this...
  2. Thread: Hi all Im back

    by MaryS42
    Replies
    16
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    2,059

    Hi guys Well once again the Lupus diagnosis...

    Hi guys

    Well once again the Lupus diagnosis was put into question and once again we had to go through lots and lots of tests and the end result is Alan doesn't have Lupus however he does have...
  3. Thread: Hi all Im back

    by MaryS42
    Replies
    16
    Views
    2,059

    Sorry guys but it seems i am going to be...

    Sorry guys but it seems i am going to be constantly asking questions as i cant seem to get answers from the doctors over here firstly do most of you receive your lupus treatment from a rheumatoligist...
  4. Thread: Hi all Im back

    by MaryS42
    Replies
    16
    Views
    2,059

    Hi Guys I am looking for advice if any of you can...

    Hi Guys I am looking for advice if any of you can help! Do any of you know if trauma can trigger Lupus as we have looked into it all and even Alans Rheumi has said he does not pose as a typical lupus...
  5. Thread: Hi all Im back

    by MaryS42
    Replies
    16
    Views
    2,059

    How are things with you Steve have you been...

    How are things with you Steve have you been keeping well?
  6. Thread: Hi all Im back

    by MaryS42
    Replies
    16
    Views
    2,059

    Thankyou both for the welcome back its good to be...

    Thankyou both for the welcome back its good to be back these past 6 or so months of not knowing if it was Lupus or Shunt nephritis has been hell to say the least.The deterioration in Alan has been...
  7. Thread: Hi all Im back

    by MaryS42
    Replies
    16
    Views
    2,059

    Hi all Im back

    Hi guys
    well as the title says im back after several months of questions tests and more tests it has been confirmed Alan definately has Lupus not shunt nephritis!!! However as a result of...
  8. Thread: Siezures

    by MaryS42
    Replies
    191
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    54,204

    Not been on for a while so thought id...

    Not been on for a while so thought id update....no change with the seizures Alan still having between 8 and 15 per day we still havn't had the necessary tests done to find out if its a mis-diagnosis...
  9. Thread: Siezures

    by MaryS42
    Replies
    191
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    54,204

    Thanks Steve I really appreciate that we are...

    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...
  10. Thread: Siezures

    by MaryS42
    Replies
    191
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    54,204

    Hi All dont know where to start we were told...

    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...
  11. Thread: Siezures

    by MaryS42
    Replies
    191
    Views
    54,204

    Hi All not posted for a while been very hectic...

    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...
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    Very pleased to tell everyone that Alan won his...

    Very pleased to tell everyone that Alan won his disability appeal he got given an indefinate award so couldn't ask for better than that and also they gave the decision to award all back money owed...
  13. Thread: Siezures

    by MaryS42
    Replies
    191
    Views
    54,204

    Thanks Steve what a relief I can now get him his...

    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...
  14. Thread: Siezures

    by MaryS42
    Replies
    191
    Views
    54,204

    Thanks mhari such a weight off our shoulders they...

    Thanks mhari such a weight off our shoulders they gave him an indefinate award which is fantastic
  15. Thread: Siezures

    by MaryS42
    Replies
    191
    Views
    54,204

    Wee bit of good news for a change Alan won his...

    Wee bit of good news for a change Alan won his appeal for DLA(disability living allowance) he has been told it will be back dated to Jan 11 which is fantastic news just wanted to share xxxx
  16. Thread: Siezures

    by MaryS42
    Replies
    191
    Views
    54,204

    Hi Mhari what you are saying sounds like thats...

    Hi Mhari what you are saying sounds like thats what it could be so i will certainly ask the doctors to look into it.They have just reduced the steroids today from 50mg to 40mg but thats because he...
  17. Thread: Siezures

    by MaryS42
    Replies
    191
    Views
    54,204

    Hi All so just another update Alan not doing so...

    Hi All so just another update Alan not doing so well the chemo still ongoing however Alan deteriorating rapidly.He's still having seizures every day between 3 to 5 and now nightly about 3 to 4 he is...
  18. Thread: Siezures

    by MaryS42
    Replies
    191
    Views
    54,204

    So 2nd Chemo is over with and have to say has...

    So 2nd Chemo is over with and have to say has gone better this time so far no seizure while at hospital however kicked off when back home no sickness but bad diahorrea for past few days but hey ho...
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    Happy Birthday Mari xxx

    Happy Birthday Mari xxx
  20. Replies
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    Sorry to hear your news Rob I hope your dad will...

    Sorry to hear your news Rob I hope your dad will be ok and you take care also my own dad got diagnosed in June with a huge tumour on his kidney he has had surgery and is back home recovering he's 72...
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    Thats the doctor been didnt give much away she...

    Thats the doctor been didnt give much away she will now submit her report to appeal board so we just need to sit tight and wait on a new appeal hearing date and fingers crossed it will all get sorted...
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    Well todays the day just waiting on this DLA...

    Well todays the day just waiting on this DLA doctor coming to witness Alan in his home environment and see how Lupus affects him fingers crossed all goes well.!!!!
    Love m.x.
  23. Replies
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    God Steve so glad you are ok and thankyou for...

    God Steve so glad you are ok and thankyou for sharing this with us all.As you know Alan is having around 3 to 5 seizures daily (sometimes more) so I do all the driving which was hard as we argued A ...
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    I actually said at his appeal Steve if they want...

    I actually said at his appeal Steve if they want to know how if affects him on a daily basis they should ask me not send out some stranger but they wern't interested!!! Its a disgrace the lengths you...
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    DLA appeal

    Hi All so this is where we're at with all this there is an independant doctor coming to the house to visit Alan this coming tues to witness him in the home environment and see how his Lupus affects...
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