"Disappointing"

I have been under neurology now for 18 months and been shunted from specialist to specialist in that time. I was eventually "diagnosed" a week before Christmas 2017 where I was told to search for more information online about my illness. Whilst this can be forgiven before the holidays as it was communication, since then I was transferred to another consultant where the long waiting game started. I have only seen this new consultant a handful of times and the maximum amount of face time has been 7 minutes. I still have no official writen diagnosis, prognosis or treatment plan. I have however been receiving occasional treatment for the rare condition I have been told I have (Which i had to Google).

In the grand scheme of things, a diagnosis for this rare disease has been quick (Compared to others suffering that I found online) so applause for that small victory.

What staggers me is that every time i see him, it's a quick "hello" and every new symptom is met with "that's normal and the way of things now." Still no prognosis or even a talk over what the disease means for me. I have had no paperwork from him at all. Nothing. Neither has my gp. The communication and care and compassion shown has been none existent.