Heads up: this is a vent post about how much this SUCKS!
OK, so the story is, I’ve been off work for the past 4 months with exertional breathlessness and no cause. They know my heart is involved, but every single cardiac test (stress test, CPCA, halter, PET/CT, cardiac MRI) has come back normal. CPET showed my CO2 is low and my heartrate skyrockets at the drop of a hat, but don’t know why, and my O2 is normal. The bloods indicate the lupus is flaring (positive ANA, positive APS, low C4, increased B-cell antibodies) but nothing else.
I went to see my cardiologist today who walked me through all my latest test results. He told me he cannot find a cardiac cause for the breathlessness and skyrocketing heartrate and cannot help me. He recommended I go back to my immunologist (got an appt in 3 weeks) and maybe consider a long covid clinic (I initially tested negative but we are all starting to wonder, as my symptoms are very long covid-like. Either that or a delayed reaction to the covid booster). I’m going back to my GP and we’re probably going to talk occupational rehabilitation and a return-to-work plan. (Even though I’m not better.)
Besides the terror of exercising with persistent breathlessness, and being pushed past what I can tolerate, and never getting better, I am so disappointed that no one can find a cause. It sucks so bad to be told over and over that no one can help me, when I am so obviously disabled. They all agree I’m not well, and I’m relieved they believe me, but I wish they could give me something concrete. All my doctors are thorough and supportive, they just can’t solve the mystery. As it is, I may or may not get better in the near future, and that’s bad enough; but this could happen to me at any point in the future and without knowing the cause, we will have to start the investigation all over again!
I’m so upset that all our investigations cannot pin down a diagnosis (which my insurance company is frequently demanding) and that even though the tests have not exactly been a *total* waste, it feels like so much effort for very little result. Some of the tests were very difficult—one even sent me to ED—and I was hoping it would be worth it because they might at least give me an answer. Nope.
Sorry for long post, don’t really need advice at this point, but commiserations and jokes welcome. I trust things will get better, but feeling angry and disappointed right now. Being sick SUCKS!