confused.com

Hi all

I am new to health unlocked too. And i am very confused with my diagnosis. I have been diagnosed with Lupus 3 years ago but since then my consultant is not convinced because my blood tests have been normal since being on steroids. Although i have all the symptoms and flare ups and there is no one there to talk to when feeling ill.

Has anyone had this problem. I am off of work feeling very low and sorry for myself at the mo and just need to know how other sufferers feel.

I'm not usually miserable i am usually the happy one. x

8 Replies

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  • Hi, sorry you are feeling so low. It does feel like you are very alone sometimes and that no one understands but we do here. I often feel my consultant is too busy and am left to struggle on my own. I end up constantly nagging my GP with each issue. My blood tests do not always show I have a flare either but the rest of me makes it very obvious! Try to keep positive :0)

  • Thank you so much it does help to know that others are in the same boat and i am not going mad. Was lucky today saw a new GP who actually listened!! Hopefully she will stay at the clinic.

    Thanks again you have lifted my spirits :)

  • I changed LHA when I moved and all of a sudden my bloods changed from positive anti ANA and DNA antibodies to negative. When I questioned my new consultant he said it was because my old health authority did more detailed blood analysis than they did so the upshot being was that for the last few years I have been poorly monitored and managed. Recently however they have relented and given me a steroid injection and put me on Azathioprine so hang on in there and keep telling them how you feel. Dont let them poo-poo you. False negatives are more common than they have you believe.

    Good Luck! :-D

  • Thank you for your positive comments. I should of joint this site ages ago. I feel alot better now knowing that i am not alone.:)

  • Just to let you know that some times you feel you may as well talk to the wall...but unfortunately this is what happens...:-( i've had Lupus for the last 18yrs am just in the middle of a flare up which has put me off work for last 5 weeks & off to see my dermatologist tomorrow :-) it's hard at times but it will get easier, just look after yourself & make a note of symptoms to tell your GP, this will help :-)

    Take care

    Sandra

  • Thank you. I luckily saw a new GP yesterday who actually seemed interested. And i go and see my professor on Friday although having to pay private to see him! This is my second week off work and i have written down everything that has happened since i last saw him in Feb this year. Hope you feel better soon..... regards Jill :0)

  • Hi Jello

    Doesn't it make you mad that you have to go private!I have the same.My Lupus doc has seen me last April ,and just cancelled my October appt to December.I am really angry so am going privately now to see if I can get some medication.

    Luckily I have mild Lupus I don't know what would happen if I was suffering like some of you guys on here.So glad of this site!

    Hope you fell better soon

    Karen

  • Its me again Jello!

    My last blood test was negative as well so I was left asking"Have I got Lupus or not?" The Lupus man has not explained anything to me and just sent me to a kidney man now before he put me on Hydroxy.. but I've been left months on my own just confused like you!It's not good is it?

    Take care of yourself and I look forward to hearing from you!

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