|The Story so far...
This is a a place were all the victims of misdiagnosis and crazy doctoring could meet. My own story is not very long as I am only 48 years old and it took me a long time to get to here without the complications of getting a rare muscular disorder. Tubular aggregate myopathy is according to the specialist not a “real” disorder but a clinical observation. They have no explanation of how or why it causes to problems it does or maybe we are just making it all up!
Just to upset them further the victims of this rare degenerative disorder refuse point blank to suffer the same symptoms. Some of them have little or no problems and have been diagnosed through a complete fluke others yet are wheelchair bound making those around them run hither and yon to their every beck and call. As it affects only the myopic or skeletal muscles it is unlikely to kill anyone. But there are always those prepared to go the extra mile to impress the doctors.
The forum page is a place where we can all meet and tell tales. Friends and family all are welcome to add their bit. After all collectively we probably know more than the doctors. Some of you will be newly diagnosed some a few years down the line. This is the place to ask and answer. Some folk may be frightened of what is in store but, I’ve found that whatever it is a little humour and a little taking the mick out of ones-self goes a long way to making it all more bearable.
So stop sitting there reading this rubbish and click the button and put on some of your own.
Tubular aggregate myopathy is by definition the formation of gathered masses of mixed minerals within the myopic or skeletal muscle. It is not understood how or why these masses occur or why they affect people in the many different ways. There are various medical papers describing how to recognise these masses. The basic principle seems to be, take a muscle sample by biopsy. This is then stained with certain chemicals which help to show up these formations under magnification.
Once diagnosed medical staff usually try a number of drugs found to help with related disorders. Some do find them helpful others only experience the assorted side effects. It seems at this point having no further course of action they lose interest and treat whatever symptoms are causing the most bother. Resigned to the fact that nothing can be done.
To be diagnosed with a “chronic progressive degenerative disorder” rarer than a virgin in a red light district may cause some folk to give up, other it seems take this information as an invitation to get into as much mischief as they can for as long as they can.
Which are you?
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