I don’t want to come over all “woe is me” because there are plenty of people out there on the internet trying to out-do each other with their bad symptoms and there are many others with MS who have it much worse than I do (my old neighbour who also has MS, doesn’t recognise me now when I see her).
I thought for the purposes of this blog that it might be useful to document some of the symptoms I have experienced both now and in the past to give readers some idea of what it is like to have MS. Please note: this list does not include the marvellous array of drug side-effects. More on those later.
Symptoms happening now:
Doublevision (since March 2008)
when I look left I see two of everything side by side. Simple as that. The more I look left, the bigger the displacement between images. Makes crossing the road and recognising people in the street difficult. Constantly closing one eye takes it’s toll too, in terms of fatigue and people thinking you are crazy.
Nystagmus (since summer 2008)
When I look right, I get nystagmus. My eyes flicker and won’t keep still. It gets worse if I’m tired or have done some exercise and I can sometimes get jumpy eyes looking straight ahead. It makes reading and watching telly very tiring and I don’t read as much these days.
Intranuclear Opthalmoplegia (since March 2008)
Looking left to right or right to left my eyes travel at slightly different speeds so it takes time for the two images to match up when looking right. Things can look a bit trippy when glancing round all over the place.
Oscillopsia (since 2007 or earlier)
my vision jumps around all over the place if I am running or walking strenuously – a bit like running with a video camera.
Pins and needles (intermittent until March 2008 and constant since then)
I get tingling sensations in my fingertips constantly. Sometimes it subsides to a faint tingle. Once or twice I have had a window of half an hour or so when they have disappeared completely (the drugs working). Mostly I get the electric tingling sensation in my fingers only, but it can spread to my hands and even my forearms. I also get these sensations in my feet, particularly my right foot. My right leg feels fuzzy for most of the time and walking can be troublesome on a bad day. I have numb patches on my right foot. This all gets worse if hot or tired. Also according to a 2004 diary entry – I had a week where half my head had pins and needles.
Bladder problems (not sure since when)
I sometimes find it hard to go. I don’t always fully empty my bladder – I simply can’t – and I can need to go to the loo several times during the night giving me a disturbed night’s sleep.
Cognitive Problems (not sure since when)
I have difficulty with concentration and short term memory – a particular problem with routine tasks, such as making payments to the child-minder, credit cards etc. My mind can wander in the middle of conversations as well and I lose the thread of…. erm… …anyway I have an old pre-diagnosis diary entry where I thought my memory and concentration had improved since taking Omega 3 tablets, but I was probably documenting a remission period.
Pain (not sure since when)
Apart from the pins and needles, I get sharp shooting pains from my finger tips occasionally. The worst pain I get is a weird cramping sensation in my legs which feels like insects (ants in my imagination) moving around under the skin. This is unbelievably uncomfortable and when it happens I can’t keep still and I can’t relax. This happens almost daily and can start as early as mid-day.
Fatigue (since March 2008, but also during hot days in 2007)
Like someone has taken my battery out. I had this at work once and found my mind blank as if I was sleeping with my eyes open. It happens intermittently and when it does I might as well be made of concrete. I will just want to sleeeep.
Stiffness / Muscle spasm (Spring 2008)
I had a problem with this in the spring of 2008. I was an old man for three days – stiff as a board. I found it very difficult to move. It coincided with having hives – I think I had an allergy to some washing powder which brought this on. I also had involuntary movement of my calf muscles in March 2008 – in a relaxed state they were moving and twitching all over the place.
Optic neuritis (March/April 2004)
Flickering lights in my vision. Some pain in my eyes when looking round. Flashes of milky white light in my vision when looking round in the dark.
Headaches (July 2004)
I reported in my diary of the time that I had a headache that had lasted for four weeks. Of course, I could have had any number of MS induced headaches, but when one lasts for four weeks, it’s a dead cert.
L’hermitte’s sign (March 2008 to Autumn 2008)
Placing my chin on my chest created an electric shock sensation travelling down my back and into my thighs, or, on a good day, like someone pulling a tickly, twiggy branch up my back. I think drug therapy may have cleared this one up for now.
Vertigo (2004 to 2008)
An intermittent symptom – it comes and goes. I felt a mild wave of giddiness the other day when I was bending down for something, but at it’s worst vertigo can make the whole world spin and induce a feeling of seasickness. Even turning over in bed can make me lose my balance completely and I have to sit up to regain my bearings. In 2004 and 2007, this was one of the major symptoms I had to deal with and I spent a night of hell intermittently spinning and vomiting in 2007. I also used to walk into the walls along the long corridors at work. It’s very unpleasant – I would rather have doublevision over this any day.
Ultra-sensitivity (pre-2007 to 2008)
I have patches of skin that can be ultra-sensitive and uncomfortably ticklish.
So there you go. Quite a wide range of stuff, sensory and visual mainly.
I guess since diagnosis I am more aware of everything that is going on, so I may have missed out a whole heap of weirdness that has come and gone over the last few years. Now I am on beta interferon, the length of time between relapses should lengthen, but I should be able to recognise when one starts when new symptoms start appearing or old ones start re-appearing and I will document it here.