feeling slightly defeated.

[Sammie1392]

so I went to the rheumatologist today.

after explaining aches , skin changes , other little symptoms like putting edema , headaches and such .. he does a physical exam on my , looks at hyper mobility but tells me I don’t meet criteria for fibromyalgia… which I didn’t think I would anyways lol.

examines me and says that he sees no sign of inflammation… even though my hands were beat red , and I have pitting edema , livedo reticular ..

He’s still doing bloodwork anyways despite feeling it’s nothing but benign stuff . I asked if I should do all of the labs on a day when symptoms are worse .. he said no, doesn’t matter and the antibodies don’t go away, they’ll show.

I have heard people say to wait until you’re in a flare for bloodwork.

can anyone say that they’ve still had the ANA positive well not in a flare?

[FandNnan]

Hi Sammie, Yes I can confirm that antibodies are there all the time. I have regular 3 monthly extensive blood tests and the antibodies are always positive for me even if I'm feeling better than usual. That's been the case for around 35 years.

Your consultant sounds like a "quiet" man and not explaining much to you. If you can see symptoms he can too so why not be more open. Because he's not communicating well you leave the appointment worried and feeling unheard!

From what I've read on this forum it seems that it takes a long time to arrive at a firm diagnosis these days (not like in olden times - makes me feel ancient😆!). I hope there's more clarity for you soon and possibly a good way forward. 😊

[OldTed60]

I think you’re doing what most of us have done when waiting for test results and assuming the worst/ best (depending on what you dread most). Antibodies are there regardless of how you feel at the time. When my ANA was at its highest titre (and the titre/ level depends on pattern so mine was high for a nucleolar pattern) I carried no specific (ENA) antibodies. Whereas these days my ANA is only weakly positive at 1.80 but my ENA always has one highly positive antibody for Systemic Sclerosis. Now that I’m definitively diagnosed with this (also Hypermobile) disease my rheumatologist has stopped testing my antibodies and I’ve stopped querying every symptom and trying to find answers.

Being diagnosed, even with a rheumatic disease with the poorest prognosis (scleroderma) , is a big relief because it frees us up to get on and live life again. So I hope you get diagnostic clarity soon.

To me what you’re describing sound quite like Ehlers Danlos Syndrome - which makes us more prone to Erythromelalgia and pitting oedema so a geneticist explained to me last year. It’s very complex and Hypermobile Spectrum Disorder can really confuse and mask the typical appearance of these autoimmune diseases such as RA / inflammatory arthritis and even more Systemic sclerosis/ scleroderma. But at least it shouldn’t skew the bloodwork. Best of luck 😊

[Beau2016]

hi Sammie so sorry you’re feeling defeated, hang in there!

I’d love to say it all gets easier but the truth is you get better at pestering / advocating for yourself - don’t give up.

I’ve always tested positive for ana and most times dsna now Docs don’t test as they tell me it has no value to treatment.

These days my routine blood tests come back all over the place with random things out of range but I feel better than other times when they’ve all been normal.

It’s a long frustrating road getting a diagnosis and for me equally difficult getting treatment even after diagnosis - don’t be afraid to ask/ demand another opinion. After 9 years of being diagnosed with lupus I transferred my care to hospital 150 miles away - finally I have a good rheumatologist.