This week has been a complete rollercoaster of emotions. Beginning with excitement, this quickly turned into desperation and turmoil, concluding with frustration and nervousness. On Tuesday I attended a physiotherapy appointment, I was under the impression that this was to be the first of at least weekly appointments. I had been extremely excited for it as I was anticipating news of trialling a second skin splint which I was hopeful would make a difference to my leg spasms.
When I had seen my Neurologist last he had mentioned to me that he had spoken to my physiotherapists the week before to advise them on how best to treat me, and that he was very keen for me to start having intensive physiotherapy locally. He was also happy for me to trial the splint and did not say too much about it. So you can imagine my total shock on Tuesday when my physiotherapists told me that my Neurologist had advised her to discharge me and not to refer me for my splint! She was left with the impression after speaking to my Neurologist, that after I have my IV antibiotics for Lyme Disease and was cured of that then I could have physiotherapy. She was shocked to learn that I have been denied IV antibiotics by the NHS unless I have lumbar puncture, which my Neurologist has recommended I do not have as it puts me at risk of developing more Dystonia.
I left the appointment on Tuesday in a completely state of turmoil. Without IV antibiotics and without physiotherapy what chance of any sort of improvement do I have? I was furious with my Neurologist, how could a person have two completely different conversations within the space of one week. Then, Thursday afternoon, a follow-up letter from my last Neurology appointment arrived reiterating that he wanted me to receive intensive local physiotherapy. I could not be more frustrated, I can only presume that they must have had a rather ridiculous misunderstanding. Yet I question how that can even happen in the first place, the conversations reported are at extremes with each other.
I am seeing my Neurologist on Tuesday for my next lot of injections, so will be able to clear this matter up with him then. It took over a year and a half, with a lot of jumping through hoops just to receive physiotherapy, so to have it taken away after one session is not something I am going to let happen without putting up a fight.