My 49 year old brother was just diagnosed with this condition. Is there a member here who also has this? I cannot find any helpful info on the internet and his docs seem to know nothing at all. I feel at such a loss as to where to turn for help. Does anyone have suggestions? thank you

Hi Jeanie, welcome. Have a look at "http://www.craiglane.proboards77.com/":http://www.craiglane.proboards77.com/ and "http://www.tubularaggregatemyopathy.info/":http://www.tubularaggregatemyopathy.info/ TAM is a very rare, very variable disease but there are quite a number with it worldwide. A good physiotherapist may help, particularly a neurophysio, although TAM is not neurological. There will be something that will help your brother, the difficulty is finding it. Just a word of warning, TAM attacks the muscle's ability to recover from exercise, so gritting your teeth and continuing to exercise despite muscle pain can do a lot of damage and progress the disease. Good luck.

I did find the site you mentioned. I guess I'm a little disappointed and frustrated because I expect to google then find all the answers and cures I want. Thank you for the sugguestion about excercising I will tell my brother right away. His doctor (who originally said it was muscular dystrophy then changed it to TAM) has put him on a workout schedule that I didn't think was good because he complains about feeling worse after excercise. If you don't mind me asking...and if I'm out of line please don't answer, but do you have this diagnosis also or know someone who does?

Hi Jeanie, No I don't mind you asking. Yes I have TAM, first symptoms in 1997/1998 and not diagnosed until 2002. There are a handful of people in Australia with this disease but I have never been able to contact them. I have been in contact with others in the US and UK via BrainTalk initially and then via Craig's forum listed previousy. Your concern to help your brother is creditable. Often I think that our families are of more help to us than our doctors. My wife was a medical librarian and with her help I have researched the medical literature. The fact that TAM attacks the muscles' ability to recover from exercise was confirmed in an article by William Schubert in the Jan 2007 issue of the American Journal of Pathology. What has helped? Very very gentle exercise, even better in a warm hydrotherapy pool. Maybe talk to a good physiotherapist about concentric rather than ecentric exercise. Increase gradually over months not weeks when you are comfortable and have no muscle soreness. I get muscle shortening and physiotherapy has helped. Some drugs help, verapamil at 360mg a day is the only one that has helped me. God luck.

Thank you for your story. I told him about the therapies you have tried. Honestly, I thnk the thing that helped the most is the fact that you have lived with this for so many years. He has only had symptoms for a few years now and with such a rare illness the future can seem so uncertain. I understand that it's just managing the symptoms as best as possible as they come and go. I wish you the very best and will check in with you from time to time.

Just had biopsy diagnosis of Tubular Aggregate Myopathy made. Does any one knew a physician or center that treats this?