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    Hello Diane,

    I have had it down but the pain as drained me out, went to have a lie in this morning my mobile going besides the house phone so that went up the wall.

    Have a smashing day mate & all my love Terry xxxxxxxxx
  2. Hi Tgal, Seems as though you and i hav been down the same road togeather with dr's & test and so many years in between tryin to get a diagnosis. the new rhummy admited they dont know cns could be lupus,sjogrens,cancer, or primary vasculitis, They kept mentioning brain biopsy & at my age 50
    and the diseases so far progressed and the presentage they will actuly know for sure afterwards i JUST Refuse biopsy. i just compleated the neuro-phyc brain test they wanted to tel them how much brain dammage i have from the cns and help them tell maby what disease has gone to my brain etc. The new rummy jerked me off the imuran & pred down to 10mg a day and was already in a bad flair and took me off boniva witch made me so sick and in more pain. And i hear ya about the anger of the doc's! Hug's and will keep ya posted!
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    Hey Diane,

    I too have CNS Lupus so I understand those zapping and tingling stuff! Does your doctor know that there is no test for Lupus? Ana, elevated ESR and Sed rate along with your other symptoms seem to be conclusive for Lupus with a doctor that understands how to diagnose it. To diagnose Lupus they have to rule out everything else (except more rare things). I spent so long going to doctor after doctor who refused to diagnose me because my bloodwork wasn't exactly like they thought it should be. I FINALLY found a doctor that really understood about what Lupus does to the body and he took one look at me and said "No doubt this is Lupus. We need to get working on you". I felt such relief (The anger but that is another story)

    I am just telling you all of this because I want you to remember that you are in charge! Make them listen. The good news is that all AI Diseases (and these are AI Diseases) are treated basically the same way.

    Keep me posted!
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    Hi Diane,

    After we chatting this morning, i went and phoned the hospital and told them about me being on B12 jabs also and they thanked me for phoning and also said my bloods had passed for the op, so it's just waiting for a date now mate.

    I do hope your ok. Loads of love Terry xxxxxxxxx
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    I am terrible sorry for the possible change in the diagnosis although it is still an AI disease. Smoking is the worst thing we can to ourselves but I know how difficult it is to do. You might want to check into those smokeless cigs. they are awesome! You get the nicotine, you still get the hand to mouth thing but no smoke in your lungs. However, having said all of that I wish I could strangle that doc! I hate it when they do the "you are going to be dead in 6 months thing". So let's put more stress on the person because they think they are going to DIE which makes them want to smoke more!

    Diane, try to take a few deep breathes. I know this is hard to deal with but you still are not alone. We are all here for you. I know the name says Lupus but we are for all AI diseases and you already part of our family. We will help you through this. What tests did he run? When will you get the results? I will be thinking of you! Hugggs
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    Hi Diane! I just wanted to stop in and check on you. Hope all is well in your world
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    Hello Diane,

    I do hope your ok mate, have'nt heard from you or seen you on the forum (your in my thoughts mate)

    I went and had my pre-op everything was fine and my blood pressure was'nt to bad and they've said if i don't hear nothing by friday off the bloods, then all is well for the op, the quicker the sooner i say.

    Hugs & kisses to you diane. xoxxoxoxx
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    Hello Diane, Nice to meet you. Thanks for befriending me. Hope you have a great weekend.

  9. View Conversation
    Hello Diane,
    Oh my god mate it does'nt look good, i'll email you later.
    I came on yesterday a couple of times and just come off pain through my right arm besides aching bad, the lot gets you down i know that and i'm popping pain killers like mad.

    Love you loads mate xoxoxoxoxo
  10. View Conversation
    Diane i'll message you when i get back as i've got a psychiatric appontment for 2-30pm and i'm not looking forward to it, as my regular doctor as retired, i know one thing for sure i'm not explaining my past away, when they have my records in front of them.

    Takecare today diane & all my love dearest friend xxxxxxxxxxx
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Date of Birth
September 30
grand baby's, flower gardening, back yard birds, koi pond, fishing.


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


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