And that, ladies and gentlemen is what I have. Yes, I do, after almost a decade, have a diagnosis. My latest rheumatolgist asked me enough questions, read through all my recent blood results and there it is. You can read up in it here UCTD. Basically, my antibody tests all show a connective diease (ANA, Anti RO, ANCA) and my symptoms are typical of a connective tissue disease (CTD). BUT I do not meet the necessary criteria for a diagnosis of any one CTD, like Lupus or Raynauds. Sometimes, people with UCTD will go onto develop full blown lupus or equivalent, but since it’s been…relatively stable it’s more likely it wont attack my organs in the same way Lupus does. Photosensitvity is very common with UCTD and that’s good to know.
The criteria are relatively straightfoward, a positive ANA on two occasions and symptoms suggesting UCTD…so really the diagnosis could have been made a long time ago, especially with the symptoms.
- arthralgia (joint achiness);
- arthritis (joints that are swollen and hot, often with redness of the overlying skin;
- rashes, usually on the face, which can worsen due to sun exposure;
- alopecia (hair loss);
- Raynaud’s phenomenon (color changes in your hands and feet in response to cold);
- oral ulcers (sores inside the mouth);
- xerophthalmia (dryness of the eyes due to decreased tears);
- xerostomia (dry mouth due to decreased saliva);
- low-grade fever (usually under 100o f);
- photosensitivity ( development of rashes or other symptoms after sun exposure).
I have everything apart from swelling of my joints. It’s annoying it took so long to diagnose, but here we are. My treatment of hydroxychloroquine is appropriate for UCTD too, so I’ve been told to increase my dose and she’ll see me in July.
Baby is doing really well, I’m 25 weeks now, no signs of heartblock, and she is leaving the danger period for that anyway. There is still a chance of neonatal lupus, but it’s small and we know to look out for it. She is measuring on target, and I’m getting scans every four weeks. I have a retest of my gestational diabetes at 28 weeks. I passed the last one so well, that I’m hoping for a similar result but the weight gain has been too fast this time.
Today, we went to Gwyrch Castle, a mostly derelict 19th Century ‘castle’. But it was really atmospheric there, such a shame it was in such a state. I actually did the entire thing in a wheelchair, my husband was exhausted. Fun though
And here is a picture of little Joey.