I'm scheduled to go to Mayo in Jacksonville on 10/06 to confirm the diagnosis of SCLS....Well, guess what...I got Covid on 9/6.  I am unvaccinated but I did get the 4 injections of Regeron and it helped!!!   I have been negative, but still symptomatic with COVID and now I think that I am leaking.   My legs are swollen, I've gained 6 pounds in 4 days...joint pain, etc.

I want to go to my PCP and see if she can do tests or blood work right now while I am in this leaky stage.  What can I ask her to test for?

Beccaj50,

As concerns what tests to run whenever you feel that you are leaking, the following conditions are measurable, especially in an emergency-room setting: hemoconcentration (elevated hematocrit or hemoglobin readings, with hematocrit levels >49% in men and >43% in women, not because of an absolute increase in them but because of the leak of plasma); very low blood pressure (profound arterial hypotension, with systolic blood pressure levels <90 mm Hg); albumin deficiency (hypoalbuminemia measuring <3.0 g/dL); partial or generalized edema, and cold extremities; and a paraprotein in the blood (an MGUS in approximately 80% of cases).  See https://en.wikipedia.org/wiki/Capillary_leak_syndrome

My advice for after you recover is that, instead of going to the Mayo Clinic -- and even if you're talking about going to their headquarters in Rochester, MN -- you (or, better yet, your physician) send your medical history to, and request an appointment to be examined by, the person in the USA who knows the most about SCLS, and who can also draw upon colleagues who know the most about related conditions: Dr. Kirk M. Druey at the National Institutes of Health in Bethesda, MD -- right outside Washington DC -- email kdruey@nih.gov, tel. 301-435-8875.