The last appointment with the hematologist he said my Kappa levels in July were 818 and 778 in August. He said I am somewhat of a mystery as my Calcium and Anemia levels are normal and my Renal function is within the correct parameters and the Bone Marrow biopsy showed less than 10% plasma cells and the whole body scan was clear. He said he was leaning towards MGUS and was ready to shuffle us out of the door. When I had the initial consultation with him i handed.him a list of my symptoms but I.think he must had not read it until my wife rattled off some my symptoms and his ears pricked up and said oh we may run a red congo test on the bone marrow biopsy. I am due to see the consultant on 28th September so any thoughts or comments on the following wouid be very much appreciated
High Kappa levels wouid be treated or how often they are monitored.
People who have been diagnosed with MGUS but have aching joints Pins and needles in hands and feet and burning sensation in hands and feet as well as knees. Stiff ankles and toes as well as stiffness in my fingers. Whether they have been referred to other specialists.
If anyone has been referred to the al amyloidosis centre in London even when their congo test has come back negative for a second opinion.
