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Thread: Hello,new here and so scared after 7 yr's of doctors finaly a diagnosis cns lupus & s

  1. #31
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    Hi Diane,

    Even though, I am a little late, I would also like to welcome you.
    Whenever I don't feel so good, all I do is read everyones posts, but don't have the brainpower to actually write anything.
    I am so sorry, that you have to go through all this and hope that you feel better soon.
    Keep coming here, we have alot of lovely, caring people here, who are always willing to listen and help.
    I am glad you are here.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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  3. #32
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    Hello Diane,
    Just dropping by mate to see how you've been in yourself?? after being upset so much from coming from the specialists.

    Love Terri xxx

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  5. #33
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    Hi debbie,
    And thank you so much for the warm welcome! That's ok your late, with my new brain disease
    im late with every thing now day's, seems like im in slow motion and just cant get
    any thing togeather.LOL and i do understand about the brain power thing.
    I so hope & pray you have a wonderful day! And feel better!!!!
    gentle hugs, Love 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.

  6. #34
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    Hi Terri,
    Thank you for checkin up on me! Thats so sweet and thoughtful! Im feeling little better
    with the diagnosis soaking in, Just now im dreading the new med's im fixen to have to start
    to slow the dammage in my brain, the name i had wrong it's Enbrel not imuran lol, im
    new to learning all these new drugs for cns sle & sjogrens. Enbrel is still an injection and
    carries the dangers of deadly infections and lymphoma, But im backed in a conner i guess
    and have no choice at this point due to the ongoing brain dammage it is progressing to
    fast due to the last MRI. It was done only 3 months from last one and they saw several more
    brain lesions. Gona ask my reumatologist to see the mri report and get copys of all
    my test reports when i go to see her Jan 4th. I have always give my puppys and dogs
    there shots, use to raise rottweilers, and chauawaua's. and yorkie's. But i just dont think
    i can give my self a shot i dont like needles!!!! Girl i have to turn my head when the nurses take
    my blood dont want to see it, makes me naushus.

    How have you been, I know you are so waiting on your appointment in Jan. I surley
    hope you get good new's and they can give you some med's to make you feel better!!!!
    You sound like me , You have so much going on with your body they have to be
    careful what they give you so that it wont interfear with something else and cause it
    to flair up or make you sicker.
    Im keeping you in my prayer's, hope you are haveing a good day!!!!
    Love 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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  8. #35
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    Hi Diane,

    I just had to laugh about " you are fixin to".
    I used to live in Dallas and over there, they are fixin to, also.
    My younger daughter still lives there and says it all the time.
    BTW I don't think you have to worry about giving yourself a shot, I think ones you have done it one time, you'll be ok.
    Good luck to you and a Happy New Year.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

  9. #36
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    Hello Diane,
    Lovely to hear from you mate, i realy hope for your sake that the damage to the brain slows down with it's progress and the meds your on can help it in that way. I'm half brain damaged to the right side of my brain but that's through wrong medication years ago and they've tried there hardest to carm my fits because of the cells left to the left hand side and the brain surgeon would'nt operate as it would have been a 50/50% operation and he said as long as i'm able to speak with you, i don't want to cause no furthur damage.
    Well you go to see your specialist on the 4th and want the same as me paperwork and so on, i see my rheumo on the 25th jan, the skin specialist the 6th of jan and he's got to give me another sort of cream again my face is a right mess and i see the gyno on the 17th of jan to see what action they're going to take to ease the loss of blood. Diane if you saw my calender for january it's fully booked, the quickest way for me to save on either Taxi money or bus fares is to move my bed in the hospital mate.

    The Sjogren's affected my face again yesterday it's just like your having a stroke and the last 3 days i've been doubled up with pain in my legs and today it's added to my back, i'm totally fedup mate like yourself.

    Come January i realy hope we both get somewhere besides aload of other member's on the site.

    All my love to you and do takecare Diane plus thanks for asking about myself. xxxx

  10. #37
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    Glad i made you laugh we all need to laugh a bit
    to forget our pain & trouble's! I was born in fortworth
    but moved when i was 1 so i guess it's a slang of the south.
    Thank's for the incouragement on the shot's and
    hope you have a wonderful & happy Nwe Year!!!
    love diane
    Quote Originally Posted by debbie-b View Post
    Hi Diane,

    I just had to laugh about " you are fixin to".
    I used to live in Dallas and over there, they are fixin to, also.
    My younger daughter still lives there and says it all the time.
    BTW I don't think you have to worry about giving yourself a shot, I think ones you have done it one time, you'll be ok.
    Good luck to you and a Happy New Year.

    Debbie
    ~Where Hope Grow's, Miracle's Blossom~
    Diagnosed,
    (CNS) Vasculitis, Lupus, Neuro-Behcet's, Raynaud's, Fibromyalgia, Diabetes, Earley M.S., Buerger's Syndrome.

  11. #38
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    Thank's so much Terri,
    Im with you on the brain operation thing! There not gonna biopsy or operate on mine
    either.dr's will have to go on what m.r.i. w/dye tells them. i also have rashes from sjogrens
    & my dermatologist gave me a steroid type cream for the skin sores & rashes and it works
    better than anything ive tryed, It only takes that cream a few days to make the raskes go away and stops itching instantly.
    Don't know, you may have tryed a steroid baced cream before or not, thought id mention
    it cause it worked very well for me and they have a mouth paste for mouth ulcers, in 2 to 3 days mouth ulcers are gone.
    Bless your heart!! On the sjogrens and numbing your face mine started again & it's scary
    i cant feel the whole side of my face ,mouth & nose ,forhead and and drool a bit, to much salava.
    And the severe leg pain! Bless you heart! I hope for you the New Year better health & med's
    to get you feeling better!!!!! Hope you have a pain free day!! Love 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.

  12. #39
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    Hello Diane,
    I've been on the steroid creams but my dermatologist as given me a break from it because the cream does work wonders to the face but they're also an ageing cream diane, he gave me another but that only stretched a year and if i put it on now it burns my face out but come jan he's got to sort me with some other, my lips are cracked/nose red/hands purple with cuts and blisters so i know how you feel.
    The numbness diane is totally horrible it just affects my right side at the moment and i can't feel nothing on the right side of my face but i have been tied out today, cleaned all through the home and did the washing, then popped to morrison's come back and had me a lovely shower, so tomorrow it's resting for me.
    Diane i'm touching wood mate at the moment i've not got mouth ulcers but when i go to the dentist every 3mths he checks my mouth and gums for ulcers plus cancer but refering salava at the moment i'm producing alot of that in my mouth and my gullet is drying out as i find alot of foods painful to swallow and the pain after is murder.

    All the best mate for a happy new year Love Terri xxxxx

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