I was diagnosed 01/2012 strictly T&T until 09/2013. It never really worked. My Immunologist was hesitant to place me on IVIG therapy. I consulted with a top Hematologist at the MN Mayo Clinic 06/2013. After a three week stay and a trip to the hospital the Expert Hematologist who led my team of doctors during my visit, wrote a letter confirming my diagnosis and recommending monthly IVIG as the best form of treatment. It took a lot all of work on my part to convince my Dr. to start the IVIG process. Once he decided to begin IVIG, I started on a monthly regiment the equivalent to 1/2 of the recommended amount prescribed. It required loads of hard work and a little push, but I now receive the recommended amount of IVIG. I also continue to take the T&T Singular and Medrol.
If I am not mistaken a patient who chronically leaks, differs from a patient who may have suffered a severe episode.
My frequent ER visits during 2015, combined with all of my blood test results during 2016 show elevated hemoglobin, decreased albumin and a host of other results that indicate I am in a constant state of Capillary Leak.
Unfortunately as Arturo mentioned in his podcast, I am being treated by many different specialists and my Immunologist isn't always kept in the loop. All of my doctors are affiliated with the same hospital, however not all of my specialists use the same lab. This makes the coordination of my care difficult.
I am still my best advocate and will have to do most of the digging before my Immunologist and I get out of this information rut. This illness is highly uncommon. New information concerning preferred medical treatment and protocol for ER visits is moving at an accelerated rate. That is the reason I usually end up behind the wheel.
If you discover a magic wand that has the ability to turn Doctors into a teenager excited by massive amounts of extra homework crossed with an adult who loves living on the edge taking risks like a teenager please let me know - and may I please borrow it when you are finished?