To continue where I left off in part 1…
I plonked myself down in the neurology waiting room; a pretty miserable place that never fails to remind me of the day I sat waiting for my diagnosis. Surrounded by posters and leaflets that screamed ‘Parkinson’s’, ‘Multiple Sclerosis’, ‘Epilepsy’, ‘Motor Neurone Disease’, I question how I ever got through those pre-diagnosis months without realising I was dealing with something serious!
I wasn’t kept waiting long, a medical student soon called for me and offered to carry my coat and bag, which I thought was rather nice. I was ushered through to meet my official replacement neurologist for the first time; ever since my original neuro-man retired I’ve never known who I will be greeted by in these clinics. I’ve seen a fair few neurologists now and they all carry out their assessments in different ways – this was the first time I’d not been asked to walk up and down the office (during my 1st outing my old neuro told me I was ‘duck-footed’, ouch!). I was asked to remove my shoes and socks and sit on the bed – again, I don’t recall ever removing my socks before and when I said as much he said he likes to tickle feet, which got my approval.
This guy clearly did things differently, not only was he incredibly thorough he also wore a concerned frown upon his face during the examination. I’ve never before seen a neuro look anything but po-faced. I began to wonder if he even knew what MS was given his surprise when my feet didn’t ‘do what they should do’ as he tapped and tickled me. Turns out he was genuinely concerned. After an age of playing with my feet and legs he concluded that I have “very bad spasticity” – my muscles are pretty much in constant spasm, the reason I’m in constant pain. I initially shrugged this off, after all, I already knew my legs were screwed; however, he proceeded to ask questions about how I got to the hospital and how I was getting home. “My car”, I answered. “You drove?” he responded, “How are your legs when you drive? Do you have difficulties driving?”. “Er, no”, I said, “Although it does feel strange and is pretty tiring”. After some contemplation my new neuro declared, “I’m going to refer you for a driving assessment, you may need some adaptations in your car… I’ll also prescribe some Baclofen for your legs, oh, and I’ll book you in for a MRI scan on the brain and spinal cord, let’s see what’s going on inside there”. I still had my nurse’s words ringing in my ears (secondary progressive, wheelchair…) and so was feeling a little fragile but I was determined to get all I could from this appointment. I mentioned the conversation I’d had with the nurse and, giving a very slow & thoughtful nod he muttered, “Mmmmm, yes, Secondary Progressive” and then changed the subject… I guess there is no actual test to determine the transition to Secondary, it is very much a game of wait and see.
Finally dismissed from my morning at the hospital I staggered back to my car and sat for a moment, my mind full of all the referrals I’d come away with.