I looked at your profiles and see that you both have the diagnosis" that my brother does. Have you found any clinics in the U.S. that have been any help to you or treatment you have felt is beneficial. My brother was feeling symptoms for 3 years before he finally was given a diagnosis in Dec 09. The first 2 years he was told it was all in his head. But as symptoms increased finally the biopsies were done that led to the current status. I just feel the need to connect with others sharing similar experiences and want to hear their stories so that I may better help my brother. We live one day at a time, but some are more difficult than others. oh, and alcwert, we share the same birthday, just a few years apart !!

Thank you so much for sharing your information with me. I read your posting to my brother. Just sharing your story with him to let him know he's not alone I think is a big help. I feel better being able to hear other's stories and just get any morsel of info that may help my brother at some point. Thank you again

i'm sorry to hear about what has happened. i can't imagine the pain but i hope your recovery from this will go quickly. are you doing workouts or any physical therapy where even a slight movement or strain could have caused this? my brother hasn't listened to me about what i've relayed as far as what's been told to me about working out. he continues to push himself and ended up making himself so sick he could barely got out of bed for a whole week. he insists it has nothing to do with the TAM. he experiences a lot of weakness and nausea and some pain when this happens and just general feelings of "not feeling right". has this ever happened when you exert yourself? again, i'm sorry you are experiencing this pain....i will be thinking of you with healing energy.

Hi, my name is Eric, just found this site and I don't see any newer conversations. Took about 3 - 4 years before they did a biopsy on me to find that I had TAM. I have 12 heart stents and 2 small strokes, I don't believe they are related to the TAM and neither does my doctor. My symptoms are constant muscle aching made more severe by activities/exercise. Cramping legs and arms....pretty painful. I do take pain medication to control it somewhat. Or it would drive me nuts. About a year before I had symptoms I was stung a couple times by a scorpion. It would be interesting to know if someone else had a similar incident. I've been taking benzodiazapines/klonopin since 1992. Don't know why, but I think there may be a connection. No pains in chest or trouble breathing. Strongest pain is located in legs, arms and around lower spine area. My symptoms started in 2003 and I can still walk and lift things yet painful. The more I do, the more it hurts. I don't think people can understand how painful this can be. It has continuously gotten worse. I would love to hear if anyone knows, what I may expect in the future. Does it sometimes end up in a wheelchair? or sometimes not. Has anyone ever died from this disease? Does anyone know if it ever stabilizes? or does it just keep getting worse? Would like the truth.....no matter what. I am not worrying about dying from it. My heart will do that. I was just thinking that it might be nice to have someone to talk to that understands for me and for them. Thank you Eric

Hello Eric, Seems that you have been through the mill to get a diagnosis as many with extremely rare diseases have. I'll answer your questions as best I can, but we are all different and TAM varies and the medical literature is often contradictory. You asked about scorpion venom and benzodiazapines/klonopin. I can't say that these were not the cause, but TAM most commonly becomes symptomatic in middle aged males as a result of a genetic defect probably present from birth. The STIM1 gene is one that has been identified and it is likely that there are others. See "IGBMC":http://www.igbmc.fr/society/actualite/85/ Obviously your best guide as to prognosis is the past progression of your disease. Many find that over exercise hastens the progression. We all hope that it plateaus as some of the other myopathies do, but I am not aware of any evidence for this. Many who have had the disease for a long time have such difficulty walking that a wheelchair is the best way to get around. For some TAM progresses fairly slowly if they are careful. At the other extreme was one who went for 10 mile hikes, dealt with the resulting pain with hugely powerful opiodes and in 6 months could not walk across the room. I know of only 2 deaths of people with TAM and the disease was not directly responsible. There are some with respiratory effects but I think that is rare and not fatal. The heart is the one we all worry about, but TAM almost exclusively attacks skeletal muscles. Researchers are often checking for cardiomyopathy and not finding it so it may be a miniscule possibility. I have just reread this and it is all a bit serious. As that great man Maxwell Smart would say, "Sorry about that, Chief."

Thank you for your reply. I appreciate your effort. Let's talk again. How long have you had it? How far has it progressed with you? Eric

Hi Eric, I have had symptoms of TAM for about 18 years. At first I fought it with increasing amounts of exercise and for a while it even seemed to help. But I did an enormous amount of damage and the disease worsened rapidly. Now I take it easy, listen to my muscles and progression is very much slower. These days I can walk short distances but otherwise a wheelchair is the go. There have been 2 reversals in the progress of the disease that I should mention. While too much exercise is damaging, gentle progressive exercise can help. This is often recommended for all sorts of myopathies and pain conditions. It involves gentle exercise such as walking on the flat, increasing the distance every week or so whenever you feel comfortable. The other is Verapamil which is the only reason that I am still walking. There is quite a bit of discussion of this on the Tamopathy forum. Best wishes, George

Thank you George, I appreciate your effort. How painful is it to you? Seems to ache pretty bad all the time. How about you? I take hydrocodone, it helps somewhat. thanks Eric

Hi Eric, When I fought the disease, there were aches and sore muscles, say 5 out of 10. So nothing like as severe as others have reported. Powerful analgesics did not help much, but reduced exercise did. This leads me to think that I am very fortunate in having a type of TAM that is not hugely painful but on the other hand is fairly disabling. Had a bit of good news today. My wheelchair has been sounding as if an expensive gearbox needs replacement. Not so, they think it is only a relatively cheap castor and I should have it back tomorrow. Thanks for the conversation.