Sorry for the delay in responding - been a hectic couple days - too many doctors - too much stuff
The other thing I do is not what lymphers should normally do, but with this type of life-threatening situation we have no choice.
I am on heavy diuretics. Two types - 6 pills a day.
That seems to have at least brought the fluid down to manageable levels. The MLD doesn't help either - at least self MLD doesn't. The lymphoscintigraphy they did basically shows almost a total lymphatic shutdown in the thoracic duct and the right lymph drainage field. There actually is also extreme concern about MLD for me as of the possibility that would push so much fluid into the lung cavity that it could be serious.
I would absolutely have them make sure whether or not there is fluid in your lung cavity.
You sound so much like me as well. Never had a weight problem and actually am small bones too. When this all started in 2006, I shot up some 65 lbs - all fluid and mostly in my ab and chest region. But, your weight should not be a factor here in determining whether or not to drain. It's how much fluid, how quickly it collects and how seriously this is effecting your life and health.
One other thing too is that they were never able to drain the ab - just the lung cavity. The fluid is the ab is simply all engulfing in the interstitial tissues and there isn't a specific "pool" they can tap into to drain.
I am still using the Pleurx drainage kit for my lungs and still removing about 650ML of fluid from each lung every three days.