Re:A boy, his brain, and a decades-long medical controversy
by tremon on Wednesday June 16, 2021 @05:19AM
(#27526515)
This is my father's experience with his hematologist. He presented around 2000 with symptoms of fatigue and shortness of breath. He got bypass surgery a year or so later, but his condition never improved -- he wasn't even fit enough to complete the (very light) physical therapy recommended after surgery.
Eventually, he started compiling his own bloodwork and measurements in an Excel sheet and could correlate the severity of his symptoms with the red blood cell count in his blood, but was rebuffed every time. After urging from us, he finally asked to be referred to a different specialist, and one of the first things he asked her was: "can my symptoms be explained from this blood work?", and he was very happy and relieved when she said yes.
In all, it took ten years after his first symptoms to be diagnosed with MDS [1]. He's gone now, but at least his last years were better than the ten before that. To this day, we don't know if his bypass surgery was a necessary intervention.
Eventually, he started compiling his own bloodwork and measurements in an Excel sheet and could correlate the severity of his symptoms with the red blood cell count in his blood, but was rebuffed every time. After urging from us, he finally asked to be referred to a different specialist, and one of the first things he asked her was: "can my symptoms be explained from this blood work?", and he was very happy and relieved when she said yes.
In all, it took ten years after his first symptoms to be diagnosed with MDS [1]. He's gone now, but at least his last years were better than the ten before that. To this day, we don't know if his bypass surgery was a necessary intervention.
[1] https://en.wikipedia.org/wiki/Myelodysplastic_syndrome