HSP Clinic Report - Symptoms too.

I received in the post this week the letter from my visit to the HSP clinic in London. On the whole the letter echoes my recollections of the appointment, as I described in May:  http://hspjourney.blogspot.co.uk/2014/05/hsp-clinic-visit.html. The main difference was the observation that I have "slight spasticity" in my arms. Now, this has bought a few things to mind which I've not really been paying attention to in recent weeks/months. (and here comes the second symptoms update post in a row!)

I have, over the last few weeks, been noticing that I feel a little less steady on my bike when I raise one of my arms to indicate. I had thought that this might be the start of my balance going as separate from my spasticity increasing, but having some spasticity in my arms would be a much more logical explanation for this. I have also been finding that I've had pins and needles more in my arms recently and that generally "something" had changed/was changing. Without wishing to alarmingly predict pessimistically, it may seem that HSP is beginning to affect my arms as well. (see "negative automatic thoughts" here as well: http://hspjourney.blogspot.co.uk/2014/04/stress-and-mood-management.html) This then sets another chain of thought going in my head as the nerves that control the arms don't end up going within the spine for nearly as much length as those which control the legs, and that makes me re-imagine what form the nerve degradation takes.

Back to normality: The letter includes the request for referral to a neurophysiotherapist, the request for a 4mg prescription of Detrusitol XL including a reminder about the dry mouth side effect, and a request for a referral to an orthotics clinic for custom insoles. I have "lax" ankle joints and walk on the insides of my feet, with some leg spasticity, clonus, tight tendon achilles and brief reflexes - all leading to rapid shoe wear.

I did discuss bowel issues briefly in clinic (as I have mentioned before http://hspjourney.blogspot.co.uk/2013/11/symptoms-update-illness-tiredness.html) . The received wisdom is that this is quite unusual in HSP (although some 60% of respondents in my survey reported some issues on this front http://hspjourney.blogspot.co.uk/2014/02/hsp-survey-results.html) and further investigation is required on this front, perhaps with an appointment with a gastrointestinal surgeon.

During June there have also been a few links to this blog appearing on various HSP group sites around the world, mostly connected with the survey results. Next weekend sees the UK HSP Support Groups AGM in Leamington Spa, which I'm looking forward to going to. Perhaps I'll bump into some of my UK readers there? Do find me and say hello if you want! (http://www.hspgroup.org/index.php/meetings/68-agm-leamington-spa)