I was recently given an initial diagnosis of antiphospholipid syndrome after being hospitalized with a second pulmonary embolism since 2015. The first PE was seemingly “unprovoked” but massive, requiring a 4-day hospital stay in an “acute care” unit. I recovered from that incident quite rapidly, returning to work and a mostly normal routine within a week of my initial hospitalization.
This latest PE, while far less serious than the first, has proven quite stubborn to recover from. I remain as short of breath and fatigued as I did before being admitted and have been unable to go back to work without my condition getting worse.
My hematologists have ordered blood tests for anti-nuclear antibodies, looking for connective tissue disorders such as SLE and Sjogren’s as the possible primary condition underlying my APS. Unfortunately, these tests were somewhat inconclusive: while I was ANA positive in a “screen by multiplex,” the so-called ANA IF was negative. When looking for specific CTD-related antibodies, only Anti SSA/Ro (associated with Sjogren’s) was positive, but not Anti SSB/La, EIA, nor any of the other antibodies associated with SLE, Sjogren’s, RA, etc. My hematologists are at a loss for how to interpret these results and are referring me to a rheumatologist whose first available appointment is 6 weeks away. Meanwhile, a pulmonologist is ordering lung function tests to help figure out my continued shortness of breath.
To sum up, I’m desperate to return to a normal routine where I have the energy to persevere through the day but my doctors seem deadlocked on how to relieve my symptoms, or even identify the specific problem. How have those of you who’ve been where I am now managed to make progress?
Thanks in advance for your sympathy and support.