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.

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Doublevision

Wahay! I am off to see an orthoptist tomorrow to talk doublevision.

Doublevision and eye movement problems in general have been my one constant since I had my last major relapse in 2008. My MS history is littered with symptoms and side effects that have come and gone or have fluctuated with other external factors such as stress, medication, temperature, exercise or pure  bad luck. Doublevision has remained constant since the spring of 2008.

Just like the MS in general, it is a companion but not a friend. It is the doublevision that reminds me I have MS when the other symptoms are lying low for a bit. I also think I have the doublevision to thank for the diagnosis – if I didn’t have it in the first place, I may not have made the fateful GP appointment. I would have probably lived with the tingling fingers, the fatigue, the occasional vertigo, even the pain for a bit longer before seeking medical advice.

Doublevision affects me only when I look left. From a single image looking straight ahead, two side-by-side images appear the instant I start looking left and the displacement increases the further I go. When I first discovered I had it, I tested it every breakfast-time by gradually looking left at two chimneys on the next street. These chimneys would eventually match up becoming one chimney with two TV aerials. It never got any worse, it never got any better. One and a half years on, it is still the same.

People ask me how I manage to drive with it. The answer is, I close one eye when looking left. Simple as that.

I find that I am constantly screwing up one eye in everyday situations, though, or I would have difficulty recognising people in the distance, crossing the road, participating in meetings and so on.

When I go out for a drink (I honestly don’t drink very much), I makes me feel drunk/ill way before I should do.

It doesn’t normally bother me. It’s constancy means I have learned to live with it. But it does tire me out and this has an impact on my mood and fatigue levels.

There are two possible solutions. One is to wear an eye patch. The other one is to wear glasses with prism lenses. I have no idea what these spectacles look like, so I have the fear of becoming the kid with the sticking plaster holding together a pair of national health specs. But then again I don’t fancy becoming Long John Silver either, therefore I have the orthoptist appointment tomorrow. It has been a long time coming and should hopefully have a positive impact on my quality of life.

A further appointment with an opthalmologist is scheduled for later this month.

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

weirdness

been quite stable for ages – just the come and go of pain and fatigue.

Today, I feel a bit weird.

It feels as if the side of my head is undulating and my right leg feels a bit weak – definitely something up, will monitor. May go away in a bit. Come to think of it – this morning my foot felt ice cold.

Hmmmm…..