Getting fit with Mr Uhthoff

This isn’t a new year’s resolution, but I have decided to get fit.

This incorporates a couple of in-built problems, the most obvious being the MS, of course, but the second being the fact that I don’t do personal trainers (I have to admit to being quite rude to the only one I have ever had) and I don’t do gyms.

Therefore I have been taking to the roads for the occasional run in the hours of darkness.

Regular readers will know that I had a spate of evening runs last year up on the nearby moors, but this time it’s serious.

Why? Because it’s winter and I can push myself a bit further each time without overheating and I’m slightly less ill than I was last year, so the repercussions of Uhthoff’s phenomenon aren’t as great. Also, because it’s dark I can run incognito (it takes a while before I get over my self-consciousness).

I have been out three times in just over a week and I have lost two pounds in weight. I want to lose about a stone overall. Plus, as you can see in my post “Giving in” I need to build up my stamina.

I am trying to build up to five mile runs with a few hills thrown in, so far I have progressed as far as a two and a half miler on the flat with a sprint for the last 100 metres or so.

I am comparing this year’s training to the last time I did some serious regular running three years ago. The 2007 fitness regime took place a year and a bit before I was officially diagnosed, so I have only realised in retrospect that the experiences I had then were due to MS.

Back in 2007 I experienced a numb leg and a rubbery burning smell afterwards which I whimsically attributed to having burnt-out some electrics in my head as I was running (not realising how close to the mark I was). I would also get oscillopsia on my longer runs.

The last fitness regime tailed off when my youngest was born. So far, as far as Uhthoff is concerned, I have been a little wobbly legged after each run, but this has diminished each time I have been out. I have also had ‘slow eyes’ for a while after I finish (so I am expecting some oscillopsia when the longer runs kick in). I still have the peculiar burning smell too.

I have been doing some reading up and now know the burning smell is phantosmia – an olfactory hallucination – and is quite common for people with epilepsy as part of the pre-fit aura or with people who have brain injuries in the part of the brain that interprets smell. I guess I must have demyelination here.

My ideal, is that one day (this year or next) I may (NB: may) do a 10k run in aid of one of the UK MS charities.

My current thinking is that I will be supporting the MS Trust for the support they showed me in terms of the excellent free information they sent to me when I was diagnosed.

With this in mind, I have been consulting the MS Trust’s superb online training information. It is well worth checking out even if you don’t have MS as they include clearly written information and training schedules for beginners as well as more experienced runners.

I’ll keep you posted on how I get on.

MS Trust open door

open door is the quarterly newsletter from the MS Trust. It largely reports on research results and the like, but despite this, is very readable. The current issue (just arrived) deals with posture, depression, misleading stem cell treatments and the impact of progressive MS on family life amongst other things.

Items that caught my eye:

Prevalence of MS in the UK may be as great as 100,000 people, not 85,000 as previously thought. The figure was arrived at after studying codes indicating an

MS diagnosis from GP records. Considering the fact that I consulted my GPs with vertigo and optic neuritis symptoms in the four years leading up to diagnosis, without mention of MS, this rings true.

Oral treatments for relapsing/remitting MS take a step closer with the National Institute for Clinical Excellence (NICE) announcing that fingolimod and cladribine will be included in their next round of appraisals. Both of these drugs have shown positive results in trials so far, but some safety issues need further research. I don’t think I need to say that I would welcome disease modifying therapy in tablet form, do I? The thrice weekly ritual of warming up syringes and choosing injection sites is a real bind. I don’t know what side-effects are associated with these drugs.

MS patients sweat markedly less than people without MS. I would guess that this isn’t the case with all people with MS, just as not everyone has the same line-up of symptoms. Heat aggravates MS symptoms, so I also guess that a sweating impairment could begin a vicious circle of overheating.

If you are living in the UK, you can sign up to receive open door on the MS Trust website: www.mstrust.org.uk