Latest rheumatology appointment... Now I really don't know what to think!!!!!

Hey everyone

I joined a few weeks ago and have posted some questions before about how hard it is to get a diagnosis / to figure out what's going on etc. first started feeling ill at the beginning of this year, joint and muscle pains, exhaustion, feeling sick, headaches etc. a very good gp thought I should have the ana test, which came back positive. I got referred to rheumatology who said they thought it was probably just post viral syndrome even though I've not had any major viruses, just normal coughs, colds etc. they said they wanted to repeat my ana test in case the first one was wrong!?!?! But the repeat one came back positive at 1:400. So my gp referred me back to rheumatology again and they saw me last week.

I had thought all along that my symptoms seemed to match lupus, including the rash on my face that one doctor spotted. But at my last appointment, the rheumatologist still says he thinks I've had a virus that I'm recovering from!?!? I never knew what my first ana reading was, but he said that the first reading contained 'all sorts of antibodies' and that my current reading (1:400) was now a third of the first one. And Iust admit while I always feel up and down, the past few days I've felt quite healthy even sitting in the sun, which I've had no reaction to.

I was just wondering from others people's experiences, is it possible I DO have lupus? Lupus was the autoimmune disease he said he was just keeping at the back of his mind and he wants to see me again in three months. Why would my ana test reading have reduced so significantly? Can viruses really make people feel as ill as I have done (even without knowing which virus it is?!).

If anyone has any ideas I'd be grateful. I did go to India last November so could I have picked up something there?

Many thanks :-)

4 Replies

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  • A virus is possible if not probable due to your test results as interpreted by your doctor/s.

    Shingles is a good example. Childhood chicken pox over and done; but the virus that caused it can lie dormant within the nervous system for years and at some point reactivate.

    An ANA test detects antinuclear antibodies in your blood which an immune system normally makes. Antibodies to help fight infection.

    In a SLE body ANA is out of order off the chart active without an infection. It goes up and down and up ...

    In a patient without SLE ANA is demonstrated as active too - but there is a known provable infection.

    Epstein Barr virus is another good example. A patient can have EBV with high ANAs. EBV can be a one off, it can also be a repeat offender, it can also lead to something other like Multiple Sclerosis.

    Best to consult with your doctor/s for more clarity on what was tested as there are many specific tests to diagnosis and or rule out SLE. Because SLE is the great mimicker the doctor/s must be certain of the diagnosis and sometimes that takes several series of tests to compare for a firm SLE diagnosis or to rule SLE out.

    Remember SLE is a relapse/remit disease/disorder. One moment it is active the next moment it is not active. It is a matter of catching the tiger by the tail.

    Take care of yourself.

  • Hello Nouska

    Thank you so much for your response :-) it has helped my understanding a lot. Epstein Barr? Is that glandular fever? I had a mononucleosis blood test and it was clear. I also was tested for hepatitis (because of being in India) and that was clear too. No tuberculosis, no parasites apparently! All very weird.

    I guess for now I will make the most of feeling normal and not constantly feeling sick.

    Lyme disease is something I have found while doing research, maybe I have or have had that? Oooooooo I just don't know!!!!

    Thanks again Nouska for your response and hope you are well :-)

  • Yes. Epstein Barr virus aka glandular fever aka mononucleosis. All one and the same.

    Were you bitten by a tick? Was there a tell tale sign of a red rash bull's eye classic tick bite pattern? If not ... forget about Lyme Disease for now.

    Keep your doctor's appointment in 3 months time and hope that those 3 months are symptom free.

    Might I make a suggestion? Turn the search engine OFF.

    If you had a viral infection that your body successfully fought off ... well done and done did. Your body is wiser. Your immune system stronger for the successful battle.

    You may not have SLE (fantastic news). You may have SLE (I hope you do not). Only and further testing will reveal what is what.

    May you stay symptom free.

    Be well and take care.

  • I first saw my rheumy a year ago after a bout of sever joint pain in my fingers which they suspected Rheumatoid Arthritis, he said no it was a reactive arthritis to a viral infection...then in november it returned stricking every joint in my body from my jaw to my toes I was crippled for months. My GP did an ANA which was positive and refered me back to my rheumy (who had discharged me) typically by the time I got an appointment things had improved a little but I started hydroxy & steroids with him saying he wasnt sure if it was SLE or palindromic arthritis. Ive seen him twice since but he has been unwilling to give me a diagnosis, I also saw a GP specialist in dermatology who pointed out the faint but clear butterfly rash and was confident my skin symptoms were consistant with SLE, but rheumy wasnt happy with this so asked for my GP to refer me to a consultant dermy of his choosing saying if she said SLE he would go with that as a diagnosis if not he would diagnose PA,however after waiting 2 months for an appointment and 2 hours in the hospital I was finally seen by a registrar as the consultant had left clinic and although she said my sympttoms could be caused by SLE they were not clearly that so she was not able to say a definate yes & confirm a diagnosis... so I know just how you feel hun x x

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