I don’t even know where to begin. My head is all over the place and honestly I feel more than a little bit miffed with my body. Here we are at the start of another year and I’m already waiting tests results for yet another diagnosis. Yup you read that right ANOTHER diagnosis, not an alternative or differential diagnosis but another brand spanking in all its inconvenient glory. In 4 to 8 weeks I’ll have my answer and until then I am meant to carry on as normal.
Usually that’s doable but right now I feel pretty defeated. I know this feeling will pass and that I will cope just like I always do however what I am currently experiencing is consuming, depressing and suffocating.
So here we go again. Distraction techniques in full swing and disney soundtrack blasting.
Today I went up to London for an appointment with my neurologist. It went fantastically well. This was only the second time he has seen me with my jaw not in spasm, the last time was our first meeting last October, and he seemed very happy that I was not in agony this time. As usual I went armed with some ideas/questions that I wanted to discuss with him.
He brought up the fact that I had seen the infectious disease doctor the other week, and said that he was happy for me not to have the blood tests and lumbar puncture, but would arrange it if I decided I wanted it, and he was happy for me to get my gp to arrange for me to have 2-4 weeks of IV antibiotics. I am thrilled at this, as it was not a conversation I expected to have with him and it went completely in my favour. I have been on oral antibiotics for several months now, and adding IV antibiotics into the equation should hopefully get rid of whatever Lyme is left.
I had my usual injections in my neck and jaw, however after discussing the ongoing issue of my glasses setting off more eye spasms he decided to inject Botox around my eyes to see if this helps improve things. I am really hoping this helps as I am meant to wear my glasses for pretty much everything, so for a fair while now I have dealt with everything being rather blurry.
I brought up with my consultant that I would like to have CBT (cognitive behavioural therapy) to help me manage my pain triggered Non Epileptic Seizures and neuro-physiotherapy to see if that will help me with my spasms. He was great with this and agreed both would be a good idea and that if I went through my GP I would be able to have it done locally. He has also offered to speak to the neuro-physiotherapist, when I get assigned one, about my condition so that the physiotherapist understands it better and therefore can treat me appropriately.
Overall I am completely over the moon with how well the appointment went, and have left with a date in hand for my next lot of injections in six weeks time.
Since Dystonia started affecting me nine months ago, I have often asked what caused it? I have accepted the fact that I have Dystonia, and why it is me that has it is no longer important to me. What does matter to me is what has caused it!!
I understand that Dystonia is caused by a part of the brain called the Basal Ganglia sending out the wrong signals, but what caused it to do that? Is it genetic, do I have a gene mutation, is it due to dopamine, have I fell and landed on my head to many times? It may seem like a trivial thing to dwell on, as after all knowing why/what caused the Dystonia, does not change the fact that I have it, all it may do is change my treatment plan. Yet it remains an important issue to me, I need to know what caused my brain to stop functioning the way it should.
What I cannot understand either is why the Doctors do not want to find out the cause? I had a CT scan done back in August which confirmed that there was nothing structurally wrong with my brain. Knowing that is great, it’s a relief and something that I can strike off as a probable cause. However beyond this scan no other test has been done, so how can they treat me if they do not know the cause? I know in many cases the cause is not always found, however surely the logical thing to do would be to test for gene mutations, trial me on levadopa etc, check that there is no cause which would require a different treatment plan, before trying and the majority of the time failing, to control my symptoms?
I try my best to avoid thinking about what has caused this, as I understand that I am unlikely to get an answer any time soon, but that does not stop me wanting it. All I can do is hope that a doctor will eventually test me for possible causes. Even if an obvious cause can not be found, I would be much happier knowing that they had at least tried!
So for now, I shall cross my fingers and hope that I will one day get the answers that I need. Until then I shall continue to press my doctors to carry out the tests, until they decided to listen to me.