Recently I went to a new specialist (neurologist) who after a 2 hour appointment decided that he thinks I may have a genetic mitochondrial disorder. This in his opinion would explain a lot of my symptoms including hearing loss, pain, fatigue, the dystonia - movement disorder and other problems. Basically what happens is that mitchondria are in your cells and if they are damaged by genetic defect then these mitochondrial disorders can happen.
There are apparently 50 different types of mito disorders and as yet they dont know what one I have or if indeed this is the problem. I believe they can also be caused virally but its more common for it to be a genetic condition. this was pretty big news for me and Jeff because the drs kept saying my condition was temporary and then all of a sudden it became possibly genetic and therefore not going to go away. I dont know much about treatment options but from what Ive read the best test is a muscle biopsy which appears to be some kind of big operation not a small needle one. This is yet to be confirmed by the doctor who that neurologist has decided to pass me onto. I see them in May. So hopefully the new neuro in May dr kimber at the RAH neurology clinic will be able to sort things out for me and give me a better idea about what is wrong why and what to do about it. Hoping it will lead to a diagnosis prognosis and also getting more home support probably from disability SA and also a better lighter wheelchair hopefully a power assist one.
Also seeing a physician who decided to send me for a sleep study first one was at home but the oxygen thing fell out and so it wasn't recording for most of the night so they decided to send me for one in the sleep clinic which i haven't got the results for yet. See him next week.
So between keeping up with TAFE trying to do first aid and all this medical stuff we have been pretty busy lately
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