It's been awhile .......i hope everyone is experiencing good days. one day at a time for my brother. I was wondering though if anyone has experienced heart issues. His doc is telling him now he needs a pacemaker because the disease is affecting his heart. Anyone have any insight on this? I told him to get second opinion and he has so many docs already but they never seem to agree on anything. PLEASE HELP !!!!!!!

Definitely get another opinion. TAM is a disease of the skeketal muscles i.e. those that attach to the bones and move limbs etc. There is one case of the respiratory muscles being affected, but that is only one in 40 years of research. There are hints of cardiac involvement, but when you look into it, there is nothing substantial. What it comes down to is that heart disease is very common. We are all going to get it if we live long enough. Onset depends on lifestyle and genetics. So TAM and heart disease will coexist, but to blame TAM is a very very dubious. As to doctors and physical therapists, there are some very good ones, so keep looking. Your brother is very lucky to have you, so concerned for him. Good luck.

He has had all the tests done for heart disease and there are no positive test results for that. Cardiologist says his heart is fine. His neurologist says that the TAM is affecting his heart and breathing muscles. He is having a lot of difficulty breathing all the time and at night is on a bipap machine. His heart is slowing to 30 beats per minute. He exhibits all the other symptoms that you both have described concerning muscle pain, weakness and mobility problems in his arms and legs. He has not listened to me about not working out so hard and has really had some major setbacks. He was given the TAM diagnosis after 2 years of blood testing and a couple of muscle biopsy. What specialty docs do you both use that you feel have helped the most? I'm not sure he's going to the right docs . Thank you so much for responding!!!!!! I appreciate your help so much. I feel really lost and helpless sometimes.

I have not been on for some time, but thought I would share my thoughts. I was diagnosed in 2006 after being treated by my MD, a Nuerologist, and Finally a Rhuemotologist was thorough enough to get to the root of the problem. The Rhuemotologist had the muscle biopsy done to diagnose the TAM. I am not totally sure what has helped me, but likely a combination of things. In addition to the TAM, she found I had Lupus. At the time, I was also about 70 LB overweight from the diabetes, lack of energy, and the muscle problems. I decided to go through the Gastric Bypass surgery and did so in 2008. I lost 80 LB which helped, but did not eliminate the Diabetes. I thought it would make my muscles better by reducing the stress from the excess weight. It did not. I finally decided last year (at age 51) to apply for Social Security disability after 2 years of recommendations from my Rhuemotologist. That was probably the best thing I could have done. I am still weak, but can now pace myself and feel better that when I was working. It is like they say, the more you work the muscles, the weaker you will become. I believe it is a reality that those with TAM need to come to grips with. My biggest problem now days is with sleep. My medications are Metformin for Diabetes, Plaquenil and Prednisone for Lupus, Darvocet for Pain, Ambien and Klonopin for sleep, and Dantrolene for muscles. I also take Valium as needed. I have tried to stop most of these and have found the only on that I must take consistently is the Prednisone. I can do nothing without it. Other than sleeping, I can miss a dosage or 2 of the the other medications..

I guess it never occured to me that he could have more than 1 serious issue. You have lupus and TAM so maybe the docs are missing something in him. Thank you for sharing your story with me. Every little bit of info helps. I wish the very best for all of you..

Jeanie - I'm experiencing very similar things to your brother. If you're still watching this forum, I'd be interested in an update. Personally I think that while TAM is traditionally assumed to only affect skeletal muscle, I get the impression there are multiple forms. I have significant central apnea (breathing fails once a minute on average, sometimes for 30 seconds, sometimes much longer, day and night other than when I'm in REM sleep oddly enough) and in addition to that my heart slows down to about 15 bpm once an hour (again, other than in REM sleep). No one has any explanation for me as to why this is happening. It does not appear to be related to the medication, and it does appear to have started after my TAM became significant. My spinal cord is also breaking down so I don't know if this is affecting my nervous system in some way as well, or if they're completely unrelated issues... I mean, TAM is rare and variable enough that it's not unreasonable to imagine there could be a variant that affects both muscle and nerve tissue -- they are related tissues...

Hi. I am new to this community, and to TAM for that matter. I was diagnosed only 2 years ago. From all of the research I have done and all the doctors I have spoken to, not much info on TAM is available. And most of the doctors I have seen have not even heard about it. So when I recently told my doctor (muscular neurologist) about the heart issues I have been experiencing, she couldn't really say whether it was TAM related or not. When I am doing any type of physical activity, such as working with my arms over my head, or pushing a heavy cart, I get this crushing pain in my chest. It feels like I'm being squeezed by two vices- from the sides and from the front and back. It lasts 15 to 20 seconds, and there are no other symptoms, such as tingling in the arms or jaw numbness. So I told this to my doctor and she didn't know what to say. Anyway, I thought I would put this out there, in case anyone else has similar experiences.

Hi Bob, There are hundreds of causes of chest pain, so you need a referral to a doc competent to diagnose this. Good luck.