Isn’t it always the case when you have an autoimmune disease that there are multiple updates over the years? Like either a change of diagnosis or an added diagnosis. I follow so many people on Instagram with the same experiences. This week I had an appointment with my rheumatologist (and a resident, so two docs which was fun – by the way I love that the hospital I go to is a teaching hospital because I think that makes everyone work a little harder to provide excellent care), and of course there is an update to my diagnosis.
Lets travel back a bit. First I was given an incorrect diagnosis of gout back in 2015 by my GP. Fast forward to February 2016 when I first saw my rheumatologist, ran some tests and then a month later gave me (maybe a little too quickly) a diagnosis of lupus. Fast forward to June 2016 and she added fibromyalgia to the list. Then we skip over to November 2016 and she decides that I don’t qualify for a lupus diagnosis and I am a “mystery.” So I have remained with a fibromyalgia diagnosis since then.
Now my diagnosis has been updated to Undifferentiated Connective Tissue Disease, which upon looking up what exactly that was, makes a lot of sense. So what is UCTD? It’s a systemic autoimmune disease that doesn’t quite fit the criteria for any differentiated autoimmune disease – like lupus, rheumatoid arthritis, or scleroderma, etc. I’ve read some different statistics on it, and it seems that around 25% of rheumatology patients have UCTD, and only between 20-30% of patients will eventually get a diagnosis of lupus, RA, etc. Symptoms usually include high ANAs, arthralgia/myalgia, arthritis, Raynaud’s, and fatigue, among a few others.
My symptoms include consistently high ANAs on blood panels that are taken every 6 months, arthralgia/myalgia, I don’t quite get full-blown Raynaud’s but certainly very red and slightly swollen fingers in the cold, sometimes numbness in my fingers or toes, and fatigue. So, while I don’t fit the criteria for lupus, I certainly fit the criteria for UTCD.
Now how does this make me feel? Honestly, a sense of relief. I am happy to have a diagnosis again, and one that seems to actually fit what is going on. My rheumy is going to fill out the paperwork I need for my work coverage (because they’ve been after my sick days), which also makes me feel relieved. Basically, I feel like it’s good to get a diagnosis because the waiting game on diagnoses can be anxiety-riddling experiences as I’m sure many of you know.
I also want to give you an update on Spike, because last week I mentioned he was at the vet. Unfortunately he had to be put down. I am heart-broken as I’ve lost my best friend.