I have had episodes of whole body swelling (obviously fluid) for approximately four years now. I get nauseated. My joints hurt. I gain and lose weight like clockwork. I stay hot (feel like i am on fire 99% of the time). I live in a small town with terrible medical resources. I have been shipped around from cardiologist to gynecologist (I also have PCOS), to neurologist to internist... The list goes on. No one has been able to figure this out. I feel like I am slowly dying. I discovered SCLS just this week and every description of symptoms I have read sounds identical to what I have going on. Can anyone recommend what kind of doctor I should see? And any recommendations in TX / AR /LA generalized area would be greatly appreciated. I'm getting to the point that I just sit and cry all the time. I need answers. Thanks, Trista

Trista, Thank you for visiting our Community! There are a lot of swelling disorders out there, but ours is very particular -- and quite brutal. Check out the "Disorder Details" and "Disorder Resources" sections for further details. You will see that it says: "Systemic Capillary Leak Syndrome is diagnosed based on measurable symptoms and the presence of an unusual protein called a Monoclonal Gammopathy of Unknown Significance (MGUS) in most patients. Measurable symptoms for diagnosis are hypotension, hemoconcentration, hypoalbuminemia and the presence of the MGUS." Therefore, bring this information up with the physician that knows you best and encourage them to read the highlights in the two key sections mentioned, just in case you do belong here. Don't give up, and keep searching for answers.

Thanks. I didn't go into real detail with my symptoms - those are only a few. But by weight gain, I mean I once gained 15 lbs. in "fluid" weight in less than two days. A week or so later, I'd lost all but about 2 lbs of it, which never seemed to go away. Happens that way with every episode. I wake up and nothing fits. It felt like I was leaning against a water balloon in my desk chair. I'm at work at the moment with a pneumonia-like cough and chest pains, swelling, and blurry vision, trying to make an appt. with my physician. I'll take this info when I go. Thank you.

@aporzeca When is the best time to have labwork done during initial diagnosis to catch levels at their highest/lowest? During peak of anasarca? When swelling first begins? Once fluid is being reabsorbed and swelling is subsiding?

First you want to have some baseline measurements taken during periods when you feel "normal" -- for potential hypotension, hemoconcentration, hypoalbuminemia and the presence of the MGUS. And then you'd like to have those same measurements taken (ideally, more than once a day) whenever you feel "abnormal," namely, after you begin to swell and all the way up as the swelling reaches its peak. Swelling in SCLS occurs because (a) plasma that normally resides inside the blood vessels starts to leak out into body cavities (usually, the extremities), and (b) in the wake of the resulting shock, physicians inject fluids into the veins of SCLS patients to resuscitate them, but this fluid is also leaked out, worsening the swelling (among other consequences). Once the episode passes (say, 2-4 days), and if the patient has survived, the leakage ceases, the loose plasma is reabsorbed, and patients return to their usual weight.

Thank you! I will take this to my physician, also.

Hi MrsT Keep at it..Arturo has put a great case. One thing to note..I found the best people to stabilise me were ICU specialists.. However the diagnosis was made by a keen second year resident. Hang in there.. Things will get better. John