Hi Everyone, 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. -Shane

Hi Shane, Do you have the mutation in the STIM1 gene?

Hi George, I have not had my genes sequenced yet, but it is something I'm interested in having done. Especially since my case is classified as congenital. I will look into it though. It would be interesting to know what gene mutations are involved. -Shane

Hi Shane, My name is Denholm and I am 17 years old. I have Cylindrical Spiral Myopathy and my mother also has it. You may have heard of it before and there seems to be a close relationship between cylindrical spiral myopathy and tubular aggregate myopathy - cylindrical spirals and tubular aggregates are both membranous in their structure and have similar staining properties. I have had it from birth. At 5 weeks of age I started to have respiratory problems and I was also noted to be very floppy at this time with delayed motor development. Physiotherapy was very beneficial for me. When I was 3 years of age my Mum and I had a muscle biopsy as she also had signs of having a muscle disorder, and these were referred to one of Australia's leading muscle experts at the time. Muscle pain and fatigue was a significant problem for me growing up and it still can be now, especially after exertion although it has mostly stayed the same and has not worsened, at least not yet. It is interesting that you mention digestive problems. I have also had digestive problems. What issues are you having?

Hello Denholm, Thank you for reaching out. That is interesting that you and your mother have it, but it makes sense. Supposedly it is very uncommon to have an inherited myopathy with primarily asymptomatic immediate family members. My digestive issues started a few years ago. I am not able to keep down solid food for the first part of the day. I spent a year on mostly liquids a couple of years ago. I also have abdominal pain on occasion that is comparable to my muscle pain (which is obviously pretty painful). There are also some issues with my stomach and its ability to close. What sort of problems are you having?

Hi shane. I am the mother of a boy who was last year finally diagnosed with tam. Hes 9 years old and his symptoms were present at birth causing complications and has been present throughout his 9 years. All his muscles not just skeletal r effected as it sound like yours. My sons specialists have neva heard of tam and so far seems like ziggy is the only person noted to have tam. I am interested in knowing ucsf clinic is and would like to know how u get on through it. My son does get occasional muscle pain mainly in legs.does meds help ease pain at all?