When my kids were still really little, every night at bedtime, we’d sing a little song. It was always to the tune of one of my Mum’s old favourite church songs “Something Beautiful” but the words changed every night. We’d take turns singing about what happened that day. Always the highlights. It was a nice way to send them off into dreamland in a good frame of mind. It always started with “Something beautiful happened today…” and the rest would all depend on what loveliness had punctuated their day. I loved hearing their little voices sing about the things they appreciated most. It was often the little things. “…I wore gumboots and splashed in the rain” or maybe “I got scratched by the cat, but I was really brave”. Every line had to finish with the long ‘a’ sound, so words like ‘hooray’ and ‘play’ and ‘stay’ featured heavily. If the syllables were too long for the melody, we’d race the words to fit them all in and collapse into giggles. Sweet moments.
Since my appointment with the Newro yesterday, I’ve been humming that little melody. I feel happy and hopeful and positive. Because something beautiful happened to me…
The ‘Newro’ (new neurologist) was brilliant. It was so nice to be welcomed into a doctor’s rooms by a person with a genuine smile and lovely nature. He had read through my notes and proceeded to ask pertinent questions. We talked about the difference between then and now. He was up to play with all the things the Immunology department have discussed with me. He explained that my response to the infusions was not a picture they had seen before with Autonomic Neuropathies, but it had been seen in other Neuropathies, like Guillian Barre Syndrome. So whatever the mystery-antibody is that has been causing my problems was impairing my autonomic ganglia, but not killing them off. Which is why I have been able to regain normal bowel function and improved bladder function. It’s why my cardiac episodes have dropped off. Why I am feeling so much better. My nerves weren’t irreparably damaged, just interrupted… for a long, long time.
We don’t know if I will continue to feel well, or if my picture will be a typical auto-immune relapse/remission type cycle. But apparently the fact that I responded so rapidly to the Methylprednisolone infusions (within days of my first dose I began to see a difference) is a tick in the box for a longer term remission! Oh my goodness I hope so! The Newro said we can’t crystal ball gaze, but if I begin to slump, and the slump lasts for weeks not days, I need to go back and see them. But in the meantime, no outpatient clinic! I’m hoping that General Medicine and Urology will take the same view and I will begin a whole new letterbox experience. No more appointment letters, confirmations, medical paperwork. The thought makes me giddy (in the best kind of way, not the old way!). I long for a calendar that is hospital appointment free!
Also The Newro has agreed to be my Neurologist if things go south again. I am so happy about that, he seems a good sort to have in your corner when you need a super clever brain around. He’s all things great doctors should be. Compassionate, no hint of ego, thoughtful, responsive, kind, clever and thorough. It all makes a very impressive package. I hope there will be other neurologists who learn from him during his career, he has a wonderful approach and manner. I do wish I could bottle that and dose them all (well, doctors of every speciality) with the same qualities. If that man ever ran for President of the World, he’d have my vote!
So my dear Dysautonomia friends, I don’t know if any of this will be helpful for you, but it has been for me. I feel like my battery is recharging. I am feeling better. The more I can do, the better it gets. In there among the good days there are still some crap days where I feel like I used to. It’s hard not to panic when that happens, but so far, every slump has been shortlived. I wish I could tell you exactly what antibody and genetic disposition combined to give me the diagnosis I have had. We haven’t been able to isolate or understand either. But for me, whacking the immune system with a sledgehammer has made a massive difference to my quality of life. I hope you find your answers too, whatever they may be. And if your picture is similar to mine, please get yourself to an immunologist!
Here is an instrumental of that melody. Something Beautiful, Something Good.