The NIH was great, it represented a very holistic approach to my health. The scans found that the ECD was also in my testis (awkward), which I did not know before. However, it appears that this is common for men with the disease and it does not indicate the disease is spreading.
They found no ECD in my heart, lungs, brain, or behind my eyes. I seem to have no neurological involvement at all, which is great news of course. They also believe that the Kineret has been working and the spread of the ECD has been halted, even pulled back some in a few areas. My dental, optometry, and pulmonary function tests all came back with good results.
I now know that I do not have celiac disease, I am not lactose intolerant, and I do not have an overly active metabolism (my BMR is 1600). I have been tested for and cleared of having more rare blood disorders then I can actually remember, and I have had the privileged of spending hours with a top notch nutrition and immunology team.
The bad news. My Immune response is so low it is unreadable on the lab test. I have Pancytopenia (low red blood cell count, low white blood cell count, low platelets). I have Neutropenia and Lymphopenia (both are related to my poorly operating immune system). My testosterone level is low, I am anemic, and I have splenic vein thrombosis.
The doctors ran out of time (in fact we are leaving the NIH with the results of many tests not back yet) but they suggested I continue to work on figuring out my coagulation profile. They suggested I continue to see a nutritionist, that I work on reintroducing foods that had previously caused me pain when eating back into my diet, and that I no longer engage in contact sports (seriously he said don't even wrestle with the kids).
Finally, the doctors suggested I add the histio group from Memorial Sloan Kettering Cancer Center to my health care team.
Overall good trip. The news is not all good but you know what they say, knowledge is power.
They found no ECD in my heart, lungs, brain, or behind my eyes. I seem to have no neurological involvement at all, which is great news of course. They also believe that the Kineret has been working and the spread of the ECD has been halted, even pulled back some in a few areas. My dental, optometry, and pulmonary function tests all came back with good results.
I now know that I do not have celiac disease, I am not lactose intolerant, and I do not have an overly active metabolism (my BMR is 1600). I have been tested for and cleared of having more rare blood disorders then I can actually remember, and I have had the privileged of spending hours with a top notch nutrition and immunology team.
The bad news. My Immune response is so low it is unreadable on the lab test. I have Pancytopenia (low red blood cell count, low white blood cell count, low platelets). I have Neutropenia and Lymphopenia (both are related to my poorly operating immune system). My testosterone level is low, I am anemic, and I have splenic vein thrombosis.
The doctors ran out of time (in fact we are leaving the NIH with the results of many tests not back yet) but they suggested I continue to work on figuring out my coagulation profile. They suggested I continue to see a nutritionist, that I work on reintroducing foods that had previously caused me pain when eating back into my diet, and that I no longer engage in contact sports (seriously he said don't even wrestle with the kids).
Finally, the doctors suggested I add the histio group from Memorial Sloan Kettering Cancer Center to my health care team.
Overall good trip. The news is not all good but you know what they say, knowledge is power.
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