Is anyone still here?

[georger]

Thanks for the quick reply. I'm looking for personal experiences. Has anyone else with a diagnosis of TAM had a positive improvement in what they can do, or has it all been negative?

[georger]

How is your exercise program going? I ask because I have been going to a physio session for exercise and balance for old folks. Certainly my balance has improved, but I've done too much in and out of the group and am trying at a week or 2 off.

[georger]

I've never seen any figures for the prevalence of TAM. Happy to be corrected if there are. Some years ago I did a calculation, but there were so many very broad assumptions that I wasn't game to share them. Now nobody is reading this forum, it's safe to do so.

There have been a number of retrospective studies of a very large number of muscle biopsies. From these it seems that tubular aggregates are detected in about 0.5 to 1% of the muscle biopsies. Only about a 10th of these represent TAM, say 0.1% of muscle biopsies. The other 0.9% are these sort of diseases:
Hypokalemic periodic paralysis
Hyperaldosteronism
Facioscapulohumeral dystrophy with aminoaciduria
Myotonia congenital
Myasthenia gravis
Alcohol-induced myopathy
Exercise-induced cramps
Drug-induced myopathy (i.e. caffeine, zidovudine).
The main reason for having a muscle biopsy is probably to diagnose a myopathy or a neuropathy. The prevalence of myopathies in the population is very roughly 200 per million. Haven't got a figure for neuropathies, so say another 200, total 400 per million.
Prevalence of TAM = prevalence of myopathies and neuropathies x % TAM in muscle biopsies = 0.4 per million
Given that TAM is no respecter of race or nation, in a world population of 8.1 billion, this
equates to about 3000 TAM folk. Even if this is out by a factor of 10, it's way beyond rare.

This calculation has more holes in it than a sieve, but it gives a very rough idea. This would mean that there are about 150 in the US and about 27 in the UK. Where are these TAMites?