Scar Wars: A Neuro Hope

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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 lastly another flippin’ referral to the bladder police…

9 thoughts on “Scar Wars: A Neuro Hope

  1. Hello I’ve had MS for 20 years now and roughly the same issues as yourself. I wondered if you’ve heard of SNS Sacral Nerve Stimulator. I’ve trialed at and it works for me an I’m on the waiting list! My bladder has a mind if it’s own and I found that having the stimulator that I could regulate my loo visits.
    Love reading your posts 😊

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    1. Hey, yeah I’ve heard of the simulator – it’s something I want to look in to. Thank you!

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      1. I will let you know how I go on when it gets implanted although due to Covid restrictions it’s not going to be for a few months 😊

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    2. I have done PTNS for several years in combination with botox bladder injections, with some temporary relief. Last wednesday I had the micro interstim implanted. (I was waiting for the full body mri scan one to be approved by the fda in the us) The jury is still out on whether or not getting it was a good choice. I currently have more questions than answers and still need to meet with the doc and manufacturer rep post op. Hopefully I will have the time to write about it after my appointment next week.

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  2. I had my annual appointment with my neurologist today – by phone. Not particularly satisfactory and it will be interesting to see what his letter says! I had to translate the first one I had using a dictionary !

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    1. LOL, a dictionary I guess that’s the same as using Google, just minus all the scary results that the internet throws up!
      A phone appointment can’t have been useful in the slightest – I hope they arrange a proper one for you within the year to make up for it!

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  3. Vicky Craven-Romain August 27, 2020 — 10:20 am

    I live with ME in Norfolk, & I’m sure you can self-refer to the continence team. I ring for an appointment when ever I notice a change or I’m concerned about anything. But I may just be on their long term list!

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    1. Yes, I think I’ve been told that I can self-refer. It’s a bit like going to the dentist though… I try to put it off as much as possible!

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  4. I’ve been on Tysabri since 12/2009 and like you, consider it a lifesaver. I have had to extend my dosage to every 6 weeks instead of every four with mris and jcv testing 3x a year, because my jcv + levels continue to climb.

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