The nerves leading up to today’s appointment had been doubling with each sunrise. I was dreading meeting my new neurologist. After a decade under the care of Prof Wonderful, and have met more than a handful of neurologists with severe god complexes before I wasn’t feeling very optimistic. Whilst I knew that it was ridiculous to tarnish all neurologists with the same brush, I had met multiple neuro’s from this particular hospital before who had awful bedside manners. Previously they had refused to take me on as patient as they had deemed me too complicated at my first appointment. The second time they met me my symptoms were brushed under the rug with a quick “ah it’s most likely a side effect of your Ehlers Danlos” but didn’t run any tests to back this up. So I was hesitant to say the least, and that I would once again be swept under the rug.
The appointment had come rather suddenly as an opening slot had become available via their virtual neurology clinic. Whilst it meant that I still wouldn’t get my botox, it would at least mean that my foot would be in the door, my name on their patient list, which feels like a positive step forwards after several months of floating around in the neurology space waiting to be allocated to a hospital.
I was pleasantly surprised by the neurologist who met with me. He was open about his retirement plans and understood my wishes for continuity of care due to the complex nature of my health. It was agreed that I would be assigned to a different neurologist, whose specialism was Dystonia, he reassured me he would book me into the botox clinic as soon a space became available. I had expected there to be an issue when I brought up the frequency of my injections (6 weekly) as this is quite a small gap between treatments than what most prescribe. His understanding of the matter was not one I’d been met with before. Normally I have to really battle to get my Drs to understand that this treatment regime was one created out of necessity to keep me out of the hospital due to the severity of my Oromandibular Dystonia.
We had had a brief chat over where we felt my treatment needed to be going moving forwards as whilst the majority of my body is fairly well controlled my jaw is feeling much like a losing battle. I still have a lot of baby teeth as I don’t have the adult teeth for them in my mouth, which at almost 30 I’m pretty happy their still in place! However several are now painful and wobbly due to the battering they have received from my tremors, spasms, and dislocations. We know from previous experiences there is no point in wiring the jaw shut as the spasms are strong enough to break the wires, but further intervention in some form is needed. We briefly discussed today playing around further with the EMG machine to see if that can pinpoint better the areas needed to be injected and some surgeries we can try. These though will obviously be needed to be discussed again in greater detail face to-face.
Overall it was a very positive appointment. I’m still devastated not to be under my old neurologist, he really helped me not only accept my conditions but also reign myself back in when I needed it. He helped me to adapt to my new life and for that, I will be forever grateful.
Dystonia and Me 