Male with this disorder

Hello. Long time lurker, first time poster. I just wanted to check in to describe my medical situation in the hopes that perhaps my case might help someone else who suffers with similar symptoms.

I’m currently 53 but symptoms started to take a debilitating toll on me when I was in my mid 30s. I didn’t realize it at the time back then that I was starting to develop generalized edema from head to toe. I kept assuming I was dealing with a lack of sleep or possibly anxiety or something along those lines.

My first symptom indicating that I had a problem was having to get up at night to urinate, which was something that I’d never done before. I was getting up four to five times per night to urinate off the fluid I was accumulating during the day. I also developed an issue with loss of appetite and was only eating one solid meal per day, usually at the end of the day. My digestion seemed to shut down, as well, when the edema was at it’s worst. All sense of intestinal movement and muscle contraction just stopped and it had a negative effect on my appetite. My abdomen was grossly distended and the rest of my body looked “doughy”, despite being thin overall. I had indents on my lower leg. I developed rashes on my legs and on my face and was extremely exhausted for much of the day. The more fluid I retained, the more I felt dry and dehydrated (dry mouth and mucous membranes and flakey skin), which I have come to learn is due to the “third spacing” of fluid/edema that leaks out from the capillaries into the tissues where it doesn’t belong.

My doctor worked me up for everything under the sun but tests came back normal, aside from elevated white blood cell count.

I’ve been screened for heart failure, liver failure, kidney failure, protein deficiency, hereditary angioedemas, Lyme disease, mast cell disorder, allergies, etc but nothing definitive has ever come back from the testing. I even spent a few days at the Mayo Clinic where they diagnosed me with Chronic Idiopathic Capillary Leak Syndrome, which the doctors admitted wasn’t an actual diagnosis but was the closest condition to my syndrome. Most folks with actual capillary leak syndrome, which is a very rare disease, develop acute life threatening attacks of capillary leakage and massive edema and wind up in the ER, which is not the case with me. The edema I experience is chronic and not life threatening. It does wax and wane but I do not get acute “attacks“ of massive fluid retention like patients with capillary leak syndrome. The doctors at Mayo recommended I try a year of IVIG (intravenous immunoglobulin) infusions because this sometimes works for the acute capillary leak patients but in my case it didn’t help at all. I had monthly infusions for over a year but discontinued due to lack of improvement.

I also want to mention that I did experience two instances of edema when I was a child (under 7) that were marginally controlled with steroids. Both cases eventually resolved over time but my pediatrician back then could never pinpoint an an exact cause, despite a thorough medical

work up. Personally, I think I have been dealing with this medical issue for much of my life but it didn’t get out of hand until I was older in my mid 30s. I think those edema events in my childhood are somehow related to the edema I developed as an adult.

I appreciate some of the posts/stories on these forums because they help me make sense of my own medical situation. Having a debilitating medical condition can be difficult. But when you have a debilitating medical condition and after years of searching for answers are still left without a clear cut diagnoses or treatment plan it can be downright disheartening. So it’s nice to know I am not completely on my own in regards to this illness, whatever it is.

Anthony