Fear of lupus diagnosis

Im new with lupus UK -i would love some encouraging words- i had a positive ANA about 3 years ago after seeing my regular doc for painful swollen finger joints- she said i had lupus and sent me to rheum doc- rheum doc wanted to repeat the labwork to make sure cuz she had doubts about it being lupus- i never went back and scheduled and cancelled two appts- never got labwork- im paralyzed with fear that shes going to say i DO have lupus- i worry constantly about this but too scared to find out- now i have been dealing with oral thrush and no clue how i got it- this has made me even more scared- how do i deal with this if i do have lupus? 😟


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8 Replies

  • Oh dear Lannsutt - it sounds as if you are making yourself more unwell for fear of what you might be told - than if you were already diagnosed and being treated for Lupus or related autoimmunity.

    Having a positive ANA is not specific to Lupus and it is actually quite common for people in the healthy population to have a positive ANA too.

    But you need to know now because Lupus or other related autoimmune diseases need treating. Also you are likely to be making yourself more unwell through worry and that isn't good for you at all.

    So be courageous and go back to your doctor - they will completely understand your fears I'm sure - and hopefully be able to reassure you that your fears are probably worse than the reality.

    Twitchy x

  • I had a positive Ana too but the RA says it's PMR but watching symptoms. Many people have false positives. Be brave and get answers.

  • Hi lannsutt

    Sorry to read your problems and worries regarding a lupus diagnosis!. I can't add anything else to Twitchy's great reply but just want to say oral thrush can be treated by your dentist. Are you due a check up, or perhaps you've already been seen hence knowing you've got it!.

    Have the strength to find out what's wrong as it could be treated and you'll be better!. Keep us posted and good luck. X

  • If they say you do, then you will be exactly the same person with the same illness you had the previous day. What I mean is, the world won't go bump...just means you can start dealing with it and stopping any progression. You also might find that you don't have it and have a huge weight taken from your shoulders. It's not a great thing to hear, but it doesn't need to be the end of the world. You'll be ok and it really is better to know than head in the sand worrying and making it even bigger xx

  • If you have lupus it changes nothing from where you are today - except you can be put on the right medication which should make you feel better and avoid problems later. Closing your eyes doesn't make the world go away however much we'd like it to!

  • Thank u so very much everyone who replied to my lupus fears- you have truly given me courage and i will deal with this head on - if i get scared i will read the replies again- thank u thank u☺️☺️

  • Don't be scared, you'll be ok :) hope it turns out to be good news for you, and if it's not so good....then you'll find everyone on here can help guide you through, stay strong :) x

  • Thank u so much 🙂

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