As far as I know from various doctors, I'm one of the only childhood onset cases in recent years. I'm 22, but had symptom onset about 12 years ago. Initially it was progressing slowly, but has picked up the pace in the last few years.
For those asking about long term prognosis, I agree with everyone that it is vastly different case to case. I originally just had mild joint and muscle pain but still competed in multiple sports. Now I cannot do more than walk and even that can prove difficult somedays. My disease started in my legs but now affects the skeletal muscles in my arms, hands, chest, back, neck, and face.
Do other people have digestive issues? The muscles that contract my stomach are also possibly affected even though they are not skeletal muscle. I was only diagnosed last year with a muscle biopsy after years of misdiagnoses. Physical therapy was helpful, but nothing has been shown to slow down the progression of the disease. Mild exercise (walking, stretching) seems to be the best practice.
In the last five years the muscle pain and fatigue have been by far the most difficult symptoms to cope with. I had decent doctors in Seattle, but none that had worked with the disease before. I now live in SF and am in the process of getting in with the UCSF neuromuscular clinic. Anyone find any success in CA or the Bay Area?
Newly diagnosed people are welcome to reach out and ask me questions. I have been sick a very long time and am well versed on the disease pathology of TAM.