u/Fadedwaif

Hi all,

I waited 6 months to get an appointment with my current rheum and because my ana is <1:80 he won't order any additional testing

My c3 and c4 are out of range low and i have severe dry eyes. My mouth isn't dry. But my anti DNA ds is negative. I identify with sjogren's more than lupus. I don't have any obvious issues with being in the sun. I have horrible neuropathy and hypermobility and fatigue.

Anyway I'm so tired of begging for tests, does anyone know of a good rheum in the Atlanta area who will order more tests? I'd like a lip biopsy but my mouth isn't dry so I'm worried, just my eyes and nose are dry all the time. And crusty gritty

My current rheum actually said what are the chances I'm both hypermobile and have an ai disease which was a huge red flag for me

Or maybe should see an ophthalmologist? It's silly because I know my eyes are extremely dry. I considered LASIK surgery over a decade ago and they put the piece of paper in my eye for some testing(??) and my eye completely freaked out for like a week afterwards

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u/Fadedwaif — 9 days ago
▲ 7 r/UCTD

I have EDS, dry eyes, and neuropathy and mitral valve prolapse. I've blamed literally everything on eds. And even my rheum likes to blame everything on eds

But historically my c3 and c4 are out of range low or in the very bottom of the range.

Here's labs I've had over the past 6 mos

c3 76 (81-157)

c4 11 (13-39)

anti DNA double stranded 1 negative (0-4)

ana screen with reflex negative

ana titre (at another lab) 1:40h nuclear speckled

ssa <1 negative

rheumatoid factor <10 (<14) negative

CYCLIC CITRULLINATED PEPTIDE (CCP) AB (IGG) <16 negative

I'm feeling overwhelmed and I don't think my rheumatologist will take my labs seriously. Is there anything I should request?

Is anyone here hypermobile? My hypermobility is obviously inherited from my dad who also has a myriad of health problems.

Thanks in advance

Edit: here's old labs to compare. I sent more to my rheum so we'll see what he says

2017 c3 70 (90-180)

Vs

2026 c3 76 (81-157)

2017 c4 11 (16-47)

Vs

2026 c4 11 (13-39)

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u/Fadedwaif — 16 days ago