I've been feeling very ill for a long time, I am 21 years old but feel like I'm 80. I've seen countless doctors and I've been pushed around, ignored and patronised.
Finally, I got the diagnosis of endometriosis. Before that I had an ANA blood test done, for weeks after all was silent. I began chasing the results and was told by various secretaries, and GP's that it was negative, all tests were negative and to stop worrying about it. Then last week, I get a letter asking me to see my GP, the ANA test was positive. After being told it was negative for weeks I finally let it sink in, and let go of worrying about Lupus, I started to think maybe the GP's were right, I was overreacting.
The positive result threw me, as I had just been diagnosed with Endo the week before and was trying to wrap my head around this disease, possible infertility and an impending surgery. I've found this quite difficult to deal with, especially since an ANA test is not a definite diagnosis, meaning more doctors and tests and questions.
I guess I'm just mad that I've been treated like I am overreacting and weak and should just over everything, like it doesn't exist. I've been treated like this pain is part of being a woman and this exhaustion isn't Lupus or anything else, its me just being weak. All GP's have done is make me feel very insignificant and small and weak. Now results are in they've started listening to me, but I just hate them all and never want to be in a doctors room again. I feel like if I was a man my pain would be validated, but instead I am patronised, made to feel insignificant, small and weak and not in control of my own body. I've been told to 'get a hobby' and try 'light recreation'.
Now I've found out that my rheumatologist referral that was made on October 30th has actually not been made at all, so I thought I was over a month into the 8 week waiting period, to find I'm not even on the system.
I don't really know what I am asking or why I am writing this. My degree is suffering,, I'm getting very behind and I've just lost my job. They say the role isn't working but I really think it's because I've been ill so much this summer. I'm just very overwhelmed and feel out of control and very small.
What are the next steps after a positive ANA test? xx
Written by
kittyIM
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Sorry to hear that you are struggling. As you have suggested in your post, a positive ANA test isn't a definitive diagnosis. Consultants will often want to repeat this test a couple of times to check the levels over time. They will probably test for other antibodies too, which are more specific to certain autoimmune conditions to help make the diagnosis. If further tests confirm an autoimmune condition then they will be likely to start you on some treatment to help manage your symptoms.
Have you spoken with your personal tutor or the disabled students representative about your current situation? They may be able to offer some additional support to help with your degree?
If you think it would be helpful I would be happy to send you one of our free lupus information packs? Just send me a private message or email paul@lupusuk.org.uk with your name and address.
Also, if you are near London, you may be interested in our support group for young people with lupus - lupusuk.org.uk/young-people It can be a great way to make friends with people that have similar experiences to yourself and receive some extra support.
Please try meditation. There are lovely meditions by Oprah And Depak. Try to avoid dairy. Take a multivitamin I use Viridian. Take walks in the parks to get your Bacteria back. Warm regards Margaret
I hope you get a proper diagnosis soon. Paul's suggestion about seeing students support services is a good one. They can be very helpful in getting you the support you need to continue your studies. Best wishes.
I'm so sorry to hear how you've been pushed around so much without answers. I think that with a positive ANA as Paul said, it's not the full picture. My understanding is that a positive dsANA (double stranded ANA) is more definitive so I would ask for that ASAP. Don't panic because everything will seem far worse than it is. Wait until you've more answers from your GP. I'd probably consider changing GPs because there are excellent practices out there where the GP will be your main support. Don't give up, there are lots of reasons why your ANA may be positive without any lupus going on. Best of luck.
So sorry to read the shocking way you have been treated by GP's . Sadly you are not alone!. As you have a positive ANA your GP should insure you see a Rheumy Consultant and should write to them . You shouldn't be penalised and have to wait extra time because your original referral was lost. See if they will do this . I'm sorry about your endometriosis diagnosis , good luck for the op. Your having to cope with so much quickly, no wonder you feel overwhelmed and angry. X
Hi all, I just want to say thanks so much for taking the time to reply. You are all incredibly kind and helpful and it means a lot.
After being told I'd most likely be waiting 15 weeks, I got an appointment at Guys Hospital on Jan 12th, after a bit of research I can see that they are really very good. Weirdly I can't wait for my appointment, for someone with a phobia of doctors & hospitals, that's a big deal!
I'm hoping I can get some answers regarding Lupus before having surgery for endometriosis.
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