I have a very surreal situation where scans have failed to find the exact location of the GI cancer and I have severe cachexia where my glutes and body composition of muscles is total flab and no matter how much I exercise I can not gain muscle mass any where in my body. I look like a walking corpse and this is terrifying to watch my body deteriorate like this and not have an official diagnosis or doctor who can give me advice or direction or even a prognosis... For the last 5 years I have had strange GI issues with strange bowels and chronic nausea and always with the feeling of being cold and hungry and never satisfied as if food does not sustain my body or nourish my muscles. I have had every medical test imaginable and yet they can not find the cancer .... they have not done surgery and biopsies show severely atrophied tissue all over my body. My cachexia is getting worse and I fear I will die soon with out a real diagnosis. Does late stage cancer cause tissue to be so damaged that it can not locate the cancer causing it? Can severe atrophy make CT scans not able to see the cancer??
This is so surreal and yet recent PET scan did not show cancer and so I wonder why I have such severe cachexia but doctors can not seem to diagnose it.
Do you know anyone that has had a hard time getting an accurate diagnosis yet they have cachexia and all the symptoms of cancer?
Any advice on specialists that will see a rare case like mine and help make a diagnosis and give me some direction?
In desperation,
LWesterlund
