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I had what may have been my last appointment with the rheumatologist on Monday. He’s done as full of a workup as he could do. But as he said, and I quote:
“You’re not exactly the easiest case…I’m baffled.”
There was conversation between the two statements, but that pretty much summed up my visit.
My bloodwork and my other tests have been suggestive but not conclusive of anything. My rheumatologist ruled out pretty much all of the big name autoimmune diseases he’d been looking for. When I told him I’d stopped taking the colchicine he’d wanted to try me on for suspected urticarial vasculitis because the side effects were worse than the symptoms – and it hadn’t even seemed to help at all – he was out of ideas.
So my rheumatologist said he will tell my primary care doctor that he recommends I see a hematologist to try to make sense of my lab work. He said I can come back and check in with him in six months. He’s leaving the practice he’s in now, though, and I’d have a 30-minute drive instead of a 5-minute drive to see him. If he can’t do anything for me, I probably won’t make the new appointment.
It would’ve been nice to have a more specific diagnosis than arthritis, but it wouldn’t be worth it if it wasn’t the right diagnosis.
So it’s still chronic fatigue syndrome, an unexplained rash I’ve had for 25 years, and now arthritis. So many catch-all, non-specific ailments. So frustrating.
Read my Big Fat Medical Update for more details.
That’s me: Christina Gleason. I’m a writer, editor, and disability advocate. I'm a multiply disabled autistic lady doing my best in this world built for abled people. I’m a geek for grammar, fantasy, and casual gaming. I hate vegetables. I cannot reliably speak, so I’ll happily conduct business over email or messaging instead.
I absolutely hate that phrase! I have definitely heard it more times than I would like. My last talk with my panel of doctors (rheumatologist, gastrointerologist, pain specialist, and endo doctor) was along the same lines and they said that we have exhausted just about all the options that are available and they really aren’t sure what to do next. They are certain that there is some underlying cause for the pain and symptoms I continue to have (and that likely ties my conditions together) but they don’t know what it is and all blood tests come back normal or inconclusive. It is such a frustrating place to be! I will be praying that the right doctor will come along to give you the diagnosis and treatment you need so you can find some answers and relief!
Check into lyme disease. Do some research on it. It sounds like your symptoms to a tee.not everyone gets the bullseye rash sometimes it’s just a rash. Lyme disease if left uncheck can mimic MS, RA and lupus.
I’ve tested negative for Lyme several times, especially since I do have a chronic rash. I almost wish it WAS Lyme, because then there would be some sort of treatment plan to work from.