After 3 months of thinking it was cardiac issues we found out its not that. My brother has finished more tests and was told yesterday that the muscle that moves the diaphram is working at 50%. Thats the reason he feels like he can't get oxygen and feels constricted in the chest/abdomen area. Does anyone have this issue? I have not read anywhere that this aggregate tubular myopthy affects this muscle too. I know there is no cure, and my attempts to find information are frustrating, but I can't help wanting to know what to expect, and wanting to know what to do. Thank you all for reading posts. This is getting so very difficult.

George, I do remember you saying in a previous post that there was 1 other case that maybe had this issue. Do you think that this is still the TAM or he may have another type too?

Hi Jeanie, You can say almost without contradiction that TAM affects the skeletal muscles i.e. those that attach to the bones and move the limbs, jaws etc. So you don't expect it to affect the heart or respiratory muscles, but there are very rare exceptions. I have never seen a credible case report of the heart being affected, but there is one relating to the respiratory muscles. This is the it: "http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2080694/":http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2080694/ The full article is there for free. It's a very odd case, because only the respiratory muscles were affected. Usually the most strenuously used muscles are affected first, such as the legs or the arms. You are right, there is no known cure for adults, but never accept that there is no treatment. If any medico says that, write them off and find a better one. Easier said than done, I know. If the limbs are affected, a good physical therapist can help. And I mean a good one, not your local village sports injuries therapist. I don't know about the US, but in Oz and the UK there are neuro-physiotherapists that are excellent, not that TAM is neurological. Have we talked about treatment with calcium antagonists such as verapamil? There is good scientific research supporting this and some TAM folk have near miraculous benefits. Sorry, I cannot answer your last question. All the best, George

Hi, I too have had a simular route. Spending unneccessary time on ECG and cardic tredmills to be told i'm "just unfit". I have for many years had difficulty getting air into my lungs, especially swimming. (thought it was to do with the clorine) turns out the muscles between the ribs account for a large part of the expantion of the lung process, and mine were going to thier limit at about 20% of that of a "normal" breather. Result tight chest, pain, soreness, lack of breath. "Must be heart problem"... I wasn't aware that it could affect the diaphagm as it is not a myopic muscle. I have asked the q's as the heart and sphincters are all muscles as are many other body functions controlled by muscular action. As I am aware it only affects the skeletal muscles. But we are here to learn and add to our combined knowlage of this strange condition.

Hi Craig, Again, I'm sorry to be asking everyone such personal questions but due to the lack of info out there, I'd like to know more from people who are experiencing this firsthand. It is the muscle that allows the diaphram to expand that is affected in my brother. Could you please tell me how long ago you found out that you were operating at "20%" of a "normal" breather. Have you had any improvement or delayed progression with any sort of excercise or meds? Thank you so much for sharing with me. My heartfelt best wishes for all of you

Hi George, I think i remember someone touching on the subject of verapamil. I think my brother may be more open to trying unconventional treatment now. I am going to suggest this to him again today and have him bring it up to his doc. Its funny you mention the nuero physiotherapists, my daughter told me tonight that she wants my brother to go to L.A. where she is a yoga therapist at a rehabilition clinic with Dr. Walker Ozar.. She treats many patients with with neuropthy/muscle tissue problems, many of whom are docs themselves. she has been having huge successes in helping these people with pain/movement and breathing. I think this may have to be a new path to try also. How have you been doing lately? My best to you

Hi Jeanie, I was diagnosed in 2004 after 2yrs of tests. Part of the follow up was breath tests oxy/CO2 saturation and all the other stuff that goes with it. I found that working within my limits(most of the time) decreases the symptoms although it often increases the frustration. Take a little longer to do thing and get places but, whats the hurry anyway. Rush around like a fool and spend the next few days/weeeks getting over it. Have you visited our site http://www.tamopathy.mysite.com There is a forum link there to. Georger is the mainstay and there a conections with the few others around the world who share this most interesting condition. I don't take anything medicine wise accept anti inflamatories which I have found ease thins when I have puushed too hard. I am fortunate to have a high pain threshold and a very stubbon constitution. I laugh at myself daily and am the first to poke fun at my inadiquacies. If you can laugh go for it it releases endorphins which help block pain.. ps see Pete I can be serious well.... nearly.

Probably not related to your problem, but I have for a long time, had problems breathing during exertion. during any physical stress, I get the feeling of being unable to catch my breath, to the point I feel as though I may pass out. I was tested for Asthma, and tested OK. At that point, they did a chemical test, and said I have Exercise Induced Asthma. I never pursued anything after that, but the medications given to me did not hae any positive effect om me.