One normally feels in control of their body, if they want to pick up a pencil or smile they can do see without a second thought. So who is in control of mine?
In July I lost control of my mouth, then in august I lost control of my eyes, and now in September I have lost control of the majority of my face, my right arm and hand. So who is in control?
Dystonia is a neurological condition so therefore it is the basal ganglia that is in control of me, or at least that is what the medical profession say. Personally I have an image of a tiny little alien bouncing around inside my brain with a wicked grin on its face, cackling away to itself whilst deciding what part of my body is going to do what today.
So little alien if you can hear me, as much as I can understand that what you are doing in there must be a hell of a lot of fun, could you give me an hours break? Just so my muscles can relax.
When you visit your GP or go to the hospital to see a doctor or consultant you expect the doctor to say this is what we think is wrong with you, this is the test or tests we shall do to confirm and this is how we will treat it. Nobody expects a doctor to ask the patient what is wrong with them, or ask them how its been treated before and what do they want done.
In my opinion if a doctor does not understand a condition then it is part of their job to go away and look up the condition or go and find a doctor who does, never is it okay to ask the patient what they want done, the patient is no doctor so should not be making a doctors decision!
Whilst I understand that Dystonia is not a common condition and for that reason alone many doctors will never have had any experience in diagnosing or treating a patient with Dystonia, it is thought to be the third biggest neurological condition, so you would hope they would have had some inkling as to what it is.. The ignorance and the behaviour of the medical society is just unacceptable.
If you go on the NHS site and search Dystonia and scroll down to treatment, the first line of treatment is botulinum toxin injections (botoux), this stops the neurotransmitters from reaching the muscles that are affected. Why a consultant felt it necessary to wire my jaw shut (especially as with some of my other medical condition it caused complications), and then try to manual manipulate it, is completely beyond me. It suggests complete incompetence with treating Dystonia. This again is ridiculous, if you are not competent in treating a condition, the don’t do it! Go away and research treatment or speak to someone who does know and can inform you of the treatment line needed!
On yet another trip to the hospital last night I was disgusted with the knowledge that doctors seem to have! This particular doctor had obviously heard of Dystonia but knew hardly anything. Telling me I would be fixed eventually. That particular choice of words annoyed me greatly! You cannot ‘fix’ a Dystonia, there is no cure. Yes there is treatment that can be effective and yes some people are lucky enough that their Dystonia does not come back (small minority). This is the second time I have had Dystonia and this time it has progressed significantly consequently I know that I cannot be ‘fixed’. Secondly when someone is in agony and crying, telling them to stop crying and think positively is ridiculous. Yes positivity is needed but I was not crying because I was being pessimistic I was crying because of the agony I was in. Overall her lack of knowledge to the condition was appalling but I am beginning to realise that this is what i should expect from the majority of the medical society.
I cannot understand the ignorance of the medical society and I do not think that Dystonia being a rare condition is a good enough excuse for their lack of knowledge and behaviour. We go to doctors for a diagnoses, information, tests and treatment. We do not attend a doctors clinic to tell them what to do, nor should we have to, yet I have, several times, been put in the position where I have had to do just that.