Four months later than planned, due to a certain pandemic, I found myself back in my favourite haunt: The Neurology Out-Patients Waiting Room. It was time to see Dr Neuro, aka James Bond, for my latest clinic. Despite the progressive worsening of my walking and my left side in particular, I made the bold decision not to take my stick. You see, last time I saw him he seemed somewhat unimpressed with my use of such an aid and said, “Why do you think you need a stick?” I should point out here that a year prior to that comment he had been the one to encourage my obtaining a wheelchair…
So, in I wobbled and the first thing he said? “You should be using a stick!” Honestly!
We went through all the usual questions, took a look at my latest MRI brain ‘surveillance’ (from Oct ’19), which showed ‘stable demyelination’ and played the finger to nose game. When it was time for me to move across to the examination couch I stumbled into Neuro Man, who was ready to catch me with his outstretched hands – oh, how I wish I’d taken my stick!
Muttering mutters of concern, my neuro proceeded to whack all my limbs with a reflex hammer several times, clearly not happy with the results he was getting first time round. Then he did the usual strength tests to see how well my arms and legs responded to force. The disgruntled muttering continued, made even more indecipherable by the fact that he was wearing a face mask. No bother, I thought, I’ll just wait to read the clinic notes in a day or two.
The clinic notes: Patient has “four limb hyperreflexia, bilateral lower limb spasticity, and a spastic ataxic gait. She has weakness of: bilateral hip flexion, bilateral hip extension, bilateral hip abduction, bilateral knee flexion, bilateral knee extension and ankle dorsiflexion”. Each of these are graded, presumably for severity, with my left side coming off worse. It goes on to say that I have “increased spastic paraparesis”.
I’m not terribly good with medical terms, you may recall tonsil-gate, however, I do have some idea that bilateral means affecting both sides and the rest has been helpfully explained to me by Dr Google. Basically, I have very spastic legs, muscle weakness and partial paralysis – all of which I knew already.
Due to a suspected relapse, which may or may not have caused the worsening, Dr Neuro thought it might be time to change my treatment, to which I quickly shut him down. No way José, I am not coming off Tysabri, it has saved my life!
All in all it felt like a pretty productive clinic. I came away with a doctor’s acknowledgement of my struggles – quite an achievement – a referral for a full brain and spine MRI and finally another blessed referral to the bladder police…