Does anyone else have big calves? I have always had big calves and I am wondering if that if it's nomral with TAM.

It's funny you ask that...  So TAM seems to always be based on a genetic mutation.  Mine is on the ORAI1 gene.  I believe my mutation caused other things to happen.  For instance, my achilles tendon wasn't long enough when I was a kid and it made me walk on my toes.  My calves were huge!  I ended up getting surgery to lengthen my left achilles which was worse than the right.  But I'd just be curious if you have the same issue?  

That's an interesting observation; I'm not sure if that's related to TAM or not.  It is nice to see that there are a couple recent posts; haven't seen any for awhile.  Anyway, I was diagnosed with tubular aggregate myopathy about 11-12 years ago.  I haven't worked full-time for more than a few weeks since that time; in my case, stress and anxiety makes the muscle fatigue, and fatigue in general much worse.  When I worked full-time for a few years the fatigue became so bad, I could literally not keep my head up at times.  Exercise is tolerated to an extent, but overdoing it, really backfires as others have observed.  Other symptoms include muscle pain, weakness, spasms, vocal issues at times due to weakness in neck muscles.  Has anyone found a physician or regimen that has had any success treating?  My neuromuscular specialist basically said the disease is so rare, let him know if I have new symptoms, and noted there is no known treatment.  I haven't seen him in awhile. 

My first advice would be to find out which of the 4 genes in your code is mutated if you haven't already.  I've heard there are 4 known genes that can cause this.  Like I mentioned, mine is ORAI1.  The ORAI1 gene can cause multiple problems in people when there is a mutation.  They are working on pharmaceuticals to help with some of these other issues (Not TAM because it's not common enough) which might be able to piggyback on individuals with TAM and help them.  That's what I'm really hoping for.  How old are you?  How are you on stairs and walking?