Friday, 11 November 2016

Clinic Visit, Physio, Symptoms and Survey Update

Clinic Visit

Back at the end of September I went for an appointment at the HSP clinic at the National Hospital in London. This was very useful. We reviewed my symptoms and treatments, and made the following observations:


The view was that my gait has improved since my previous clinic appointment (May 2014 - This was a bit of a surprise, since I've been noticing some general deterioration in my gait recently. We discussed that the improvement is probably because of my physio, stretches and wearing the insoles (my referral for these came from this visit), and actually they have helped me quite a bit - it was just that I didnt notice the initial improvements from this. My conclusion is that I dont have a dataset to measure this against.

We discussed spasticity medication briefly. There is no need for me to start taking this yet, and we'll review again next year. Generally, the first one to try is Baclofen, and I would start on a low dose, increasing gradually until we saw some benefit.


I've not had an MRI scan so far, and there is a request for this in the letter to my GP. An adventure for 2017 no doubt. I understand that an MRI scan can be used in the diagnosis in order to rule out other possibilities, but the MRI scan will provide a marker to see any deterioration in the spinal cord.

Everything else!

We talked briefly about fatigue - not a big problem at the moment, bladder control - no need to have a post-void residual (PVR) at the moment as my medication has helped with the urgency. If my problems return then it might be time to start self-catheterisation. PVR is measuring the amount of urine left in the bladder after having a wee - probably done with ultrasound. During 2016 my medication changed from Detrusitol to Neditol, but these have the same active ingredient - tolterodine. We also mentioned my AFO's briefly, but not my Pilates.


I need to keep on with the stretches.


I also had another appointment with the physio as well - a new lady as my previous physiotherapist has retired. We went through my stretches and I got a few more tips to refine the ones I already do, and a couple of new things to try.

Cycling Monitoring

I've now moved into the world of monitoring my cycling. I have signed up to Strava and use my phone to track my cycling to and from work. My aim, over the long term, is to track any gradual changes in speed/time as a measure of change in spasticity. If anyone wishes to follow me, they're welcome to!

Survey Update

I'm now about half way through my survey collection, I've about 100 results, predominantly from the UK and USA. Thanks to those who have completed so far. If you can spare 15-20 mins I'd be very pleased for some more responses.

I've people across the range of mobility. Looking at fatigue, there are responses across the scale, and I'll see how this varies with mobility.

Some answers not too surprising: fatigue affects many people's walking and ability to do things requiring physical effort. Many people are shattered by the end of the day, and many who over-do know about it the next day. There is a mild preference for the NFI-MS scale.


  1. Please keep up this blog, I am going through the same cycle you have been. Hoping it wasn't HSP but based on your blog and history, I have the same experiences (shaking legs when stressed, brushing the ball of the foot when walking, occasional stumbling toes).
    Anyway, whilst disappointed at least now I can stop looking for a diagnosis.

  2. Inspirational Adam. Seeing your article on Axis and then reading this adds understanding to a professional friendship but also a personal understanding.
    I hope your openness brings greater understanding and benefits to research into your condition.