Misdiagnosed?

[Chrissy001]

After receiving my diagnosis of SLE lupus five months ago by my GP I have finally seen my consultant, this after three cancellations by the hospital, my consultant is retesting my bloods and urine because he believes that my original blood test was a false positive and that I may not have Lupus..my next appointment is December 31st unless they call me back in...confused! I still have all of my original symptoms, hair loss, rashes, mouth ulcers and joint pain but still no medication or sign of relief.

[Paul_Howard Partner LUPUS UK]

Did this consultant suggest an alternative diagnosis as the cause of these symptoms? Hopefully the follow up tests will reveal the cause so that you can start some treatment. If you are unsatisfied with the diagnosis or treatment plan that this consultant gives you then you are entitled to a second opinion. You just need to ask your GP for a referral to a different consultant.

[Chrissy001 in reply to Paul_Howard]

Many thanks for your advice, will get back to you.

[Terrier_Lady]

I am so sorry to hear this. It took me 3 rheumatologist before I found one that would agressivly treat me. Your blood work can be positive at time and negative at other times. That doesn't mean you don't have lupus if you have the symptoms. There is also a small percentage with SLE that are sero negative. Meaning they have a false negative for their ANA blood tests but still have all the symptoms and diseases activity. This can make it hard to find a rheumy that knows what to do with you. The first one I saw wouldn't diagnosis me. Then the 2nd one said yes it's SLE but wasn't proactive in my care and my primary care physician ended up managing most of my treatment as the specialist wasn't available and then she referred me to my current rheumy who has been amazing. While my SLE is progressing he is very on top of managing it. I know it's hard but hang in there and keep looking for answers even if you have to see several rheumatologist. You have to find the right one who really wants to help their patients and can admit that they don't have to have all the answers for what is going on with your body. SLE is unpredictable and sometimes you have to try things to see what will work for you. Prayers for you to find answers soon.

[Chrissy001 in reply to Terrier_Lady]

Thanks for your comments and advice... I obviously need to hang in there and be proactive with consult. Will report back.

[Barnclown in reply to Chrissy001]

Yes, you're right.

You've got great replies. There is little I can add. Just want to wish you the best of luck with this: you can do it: you're well informed and have this forum full of experienced patients supporting you. Take heart. And, please do report back 🍀🍀🍀🍀

[Circles in reply to Terrier_Lady]

My sentiments exactly.Went to reumy yesterday and he explained he does not have all the answers but told me I'm photosensive and left on plaquenel also worried about raynauads. I have new gp so anything I'm worried about I will go to her. Didn't confirm sle but lupus syndrom e without organ involment so far. I'm happy with that at the moment until things change. And when and if they do I will let them know I'm still here and well informed. Factor 50 every day.lights effect me always I know I have lupus just waiting for them to catch up lol before any more serious stuff happens and then I will tell all I told you so. Have to laugh or else cry rivers done that long time ago. Keep fighting we are possibly the strongest people on this planet.

[Chrissy001]

It is apparent that nothing is clear cut about lupus. After reading many of your stories what comes across is the frustration of the 'unknown' nature of the disease.

[Chrissy001]

Well I was confused before, but now post my December the 31st appointment my new diagnosis is that of RNP antibodies. My vitamin D result was marginal. I do not have Lupus even though my first results was postive for Lupus. They also tested for Coeliac Disease because of my issues with digestive problems and continuing mouth ulcers, this after any contact with wheat. The result for coeliac disease also came back negative. (again relief!) The consultant has suggested that I return to my GP for a referral to an immunologist to test for allergies...possibly wheat? The consultant also added that i could return to him at any time if my symptoms got any worse. Anyway, that's where I am now, not even sure that i belong on Healthunlocked. I feel like a fraud.

[Paul_Howard Partner LUPUS UK in reply to Chrissy001]

Hi Chrissy001,

I'm sorry to hear that you are still struggling to get a diagnosis. Did a doctor explain what the RNP antibodies means for you?

Please don't feel that you can't post within this community on HealthUnlocked. Many of the people here will have had (or are still having) an experience like yours. I hope that you can continue to benefit from the support and advice of members here.

[Chrissy001]

Update ...after another referral to this time an immulogist, again more allergy tests, for especially wheat, my diagnosis is now A..S. Ankylosing spondylitis and autoimmune disease RNP with antibodies. I discovered that ommiting wheat from my diet has elevated my symptoms, mouth ulcers, joint pain and gut problems.