Monday, 29 December 2008

Time off

I've been feeling pretty good since my last post. Not affected by the Rebif much at all. Tonight it's the turn of my belly to get the jab. Possibly my least favourite jab site. It always hurts, despite being the site with the most fat to plunge the needle into.

I really must start running in the new year. I gave it up a year and a half ago when my youngest daughter was born and a relapse and diagnosis of MS put it on the back burner for a while. I heard someone quote once that if you give MS an inch, it will park a truck in it, so I'm not going to give it an inch... I'll run the risk of Uhthoff and fatigue and I'll work that belly off. I am a stone heavier than my "comfortable" weight and about a stone and a half heavier than my target weight.

The girls are off to Manchester to visit friends and family for a couple of days, giving me some "time off," though if you think of time off as me putting my feet up, think again. I have a couple of rooms to clear and a wooden floor to clean and varnish. I also have a few other DIY jobs up my sleeve as a (pleasant) surprise for when the girls come back.

Even though I can hear the reversing beeps of a lorry and my MS MonSter leaning out of the cab window waiting, I know I mustn't overdo it. I am a world class procrastinator and I have a film to watch (4 Months 3 Weeks & 2 Days), so I'm off to stick the kettle on...

Tuesday, 23 December 2008

The morning after... groan!

I felt very rough this morning. All my joints ached and I even felt a bit nauseous. I injected at 10.40ish last night. I woke at around 2am to see to one of my children when I felt groggy with sleep but fine otherwise. I finally woke up at 6.30 this morning and felt as though I had been hit by a truck. I guess this is the flu like symptoms. I also noticed I was sensitive to different temperatures. My daughter's cold hands and the too hot shower water both sent my nerves screaming.

Luckily I had a blood test this morning, so I didn't have to go to work so early and was able to go back to bed for 15 minutes after breakfast.

My blood made a nice squirty noise as it filled one of the test tubes. Both the nurse and I smiled. She said she'd had an 'interesting' morning collecting blood from the mental health wards saying she was always a little worried in this situation - that there might be gruesome noises to freak the patients out.

A combination of ibuprofen and paracetamol are helping me ride it out. My next injection is due on Christmas Eve, but I might delay this by a day - I don't want to be ill on Christmas morning.

Monday, 22 December 2008

Double trouble?

My jobs for this evening include stripping wallpaper, bathtime and bedtime for the kids, wrapping Christmas presents, going to the supermarket to stock up on festive goodies, shifting the sofa and covering it with dust sheets ready for the plasterer... oh! and shooting up with Rebif (left thigh night tonight).

Well it's full dose time, today. After a couple of weeks of Beta Interferon at 22 micrograms, I double it to 44 tonight. From what I have read on discussion boards etc, the side-effects should start kicking in from now on. Hurrah! I have already experienced the achey joints and the hot flushes - will I get them twice as often? Will they be twice as bad? Will I start getting the injection site reactions I have heard about?

Probably none of the above.

Only time will tell, of course.

Typically, I have forgotten to attend this morning's scheduled blood test and have apologetically re-arranged it for first thing tomorrow morning - the 'morning after' so to speak. Also, typically, the next injection is on Christmas Eve.

Life with MS - Part Two - Medication

I have been dosed up this year, like I have never been dosed up before.

I mentioned in an earlier post that having MS is a little bit like having an uninvited monster following you round everywhere (mine has been clinging onto my right leg all morning). In order to stop the monster from suddenly flipping and getting all aggressive on me, I need to give it some drugs. The main ones are:

The first drug prescribed was a massive one-off dose of steroids (methyl prednisolone). To give you an idea - patients with severe asthma are sometimes prescribed approximately 40mg of this steroid every day to combat whatever it needs to combat for them. I took 500mg per day for 4 days. This was in order to fight the inflammation in my brain and give my body the kick start it needed to repair the myelin damage in my brain and spinal cord.
Benefits: it cleared up a non-MS related dodgy knee
Side effects: bad indigestion for a week, nasty metallic taste in my mouth, short temper (just ask my family), increased appetite (despite the heartburn) and therefore weight gain.

This is an anti-convulsant normally given to epileptics, but can apparently help nerve pain in MS patients. I take it for the pins and needles, the ants under my skin and any other nerve-related pain that I am experiencing. I think it was supposed to help my eye problems as well. I am gradually working my way up to the full dose of these (900mg a day) which I should be on by Christmas - I am currently on 600mg per day.
Benefits: I am not up to full dose yet and it's still early days but I get the odd window of normal sensation in my hands every now and then and my L'Hermitte's sign has cleared up
Side effects: Drowsiness - I feel very sleepy in the evening and sometimes during the day. Hallucinations - I am seeing quite a lot of things that aren't there - I saw someone standing in a corridor at work the other day staring at me, when I looked again it was a filing cabinet - along with movement glimpsed out of the corner of my eye this is getting to be a fairly frequent occurence.

Beta Interferon:
I inject this under my skin three times a week (Mon, Weds, Fri). I am currently on a 22 microgram dose which is increasing to the full dose tonight (44 micrograms). The purpose of this is to interfere with and suppress my body's auto-immune system to stop it attacking the myelin around my nerve cells.
Benefits: supposed to increase the time between relapses and make each relapse less severe. It is too early to tell with me, but I'm glad I'm on it.
Side effects: Not up to the full dose until this evening which is when the fun supposedly starts, but I have already had achey muscles and hot flushes. I inject before bedtime so that I can sleep through any nastiness but I can feel a bit crappy on Tuesday, Thursday and Saturday mornings (aches and hot sweats). The injection sometimes leaves a bruise too.

Because of my suppressed immune system I have already had my flu jab, and I am expecting to have jabs for meningitis and something else (I can't remember what).

Omega 3 for vegans and vegetarians:
I made a diary entry, just over a year ago where I equated taking Omega 3 with improved cognitive performance. I noted that I was more able to "think on my feet" and wasn't forgetting as much stuff. I think it probably co-incided with the start of a remission period, but I reckon it's worth a shot, so I have started taking it again.

Ibuprofen / Paracetamol:
to combat the effects of the Beta Interferon.

Of the drugs above, I may take the steroids again next year at some point, depending on my symptoms and the Gabapentin is under review. It is a "dirty" drug apparently so side effects are quite common. If my body gets used to it, fine, but there are other drugs I could try in it's stead.

Sunday, 21 December 2008


A man goes on holiday and leaves his cat with a friend. When he returns he asks how the cat is.

"She's dead!" comes the reply.

"Jesus mate, you could have broken the news a bit more gently!" he says "you could have said something like she somehow escaped... she jumped on the roof... there was a loose tile... it was touch and go for a while... "

"Oh gee, sorry!" says his friend, "I didn't think."

A couple of years pass and the guy goes on holiday again. This time asks his mate to look in on his elderly mother while he is away. When he comes back he asks how she has been.

"Well, it's like this..." says his friend nervously "she somehow escaped... she jumped on the roof... there was a loose tile..."

Thursday, 18 December 2008

Weird new symptom alert - update

The on-and-off hot foot sensation from the other day has now been replaced with an ice cold foot. For most of my drive in to work this morning my right foot felt as if I had been kicking snow around with inadequate footwear on.

I worry about my right foot and leg. I often think that in the unlikely event that I "lose" a leg - it's going to be the right one. Bang go my childhood dreams of playing on the wing for Man City.

I know I have at least three large patches of myelin damage in my spinal cord - the one that causes L'hermitte's must have been subdued somewhat but seeing as I'm having bad pins and needles in both hands at the moment and a seriously fuzzy leg I'm wondering if the increased dose of Rebif (beta interferon) is having this effect. Another increase in dose next week - oh joy!

Wednesday, 17 December 2008

Life with MS - Part One - Symptoms

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.

Other symptoms:

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.

Tuesday, 16 December 2008

Physio optimism

I have a physio appointment on Thursday this week. I wasn't expecting it, but I had a letter informing me about it at the weekend. The clinic is round the corner from my home.

I've got time off work to go and I'm looking forward to it. I hope they can have a look at the rock hard muscle round lumbar number 4 while they're at it. It doesn't give me any problems, but I pulled my back picking leaves up a few years ago and the nurse who did my lumbar puncture said it was so hard it was impossible to get a needle through. So something is obviously not right still. I expect they will talk to me about exercises and stretching to prevent spasticity and stiffness. They might want to look at the way I walk with my dodgy foot and leg as well.

I wouldn't mind trying something like t'ai chi. I could probably get it on the NHS. Yoga is a definite no, though. Last time I tried it I couldn't stop giggling.

Monday, 15 December 2008

My MS History - Part One

Once somebody tells you, you have MS, you start to put a jigsaw together. You wonder whether that strange tingling sensation you had in your right arm last year had something to do with it, or in my case the vertigo diagnosis from the previous year and the little numb patch between my big toe on my right foot and the others.

It all happened at roughly the same time, but seemingly by stealth as I can't put an exact time or date on it. My old office at work used to look out onto rolling Derbyshire scenery. In the distance there was a radio mast on top of one of the hills. I remember looking up at that radio mast and hilltop one morning to see two radio masts and hilltops, but weirdly, only when I looked left. Also, when I hammered away at my computer keyboard, I noticed that my fingers felt a bit tingly. 'RSI?' I wondered.

I had recently had delivery of a new computer at work and I moved my workspace around and shifted my desk from one side of the room to the other. When this sort of thing happens, my employer automatically sends a health and safety person round to look at how you are sitting, whether the new screen you have is causing any eye problems ("Yeah, well I do have this problem with double-vision"), or whether your seat is suitable ("Funny you should say that, but I get this strange electrical tingling sensation down my back and into my thighs when I put my chin to my chest"). The double-vision I put down to eye strain as I had other unexplained problems with my eyes a few years before (this particular jigsaw piece hadn't dropped into it's slot at this point).

The health and safety guy, barely into his twenties, was non-plussed. "Maybe ask your GP," was his suggestion.

"Yeah... maybe I will"

I recounted my recent problems to my brother shortly afterwards while watching Man City lose to Fulham at the City of Manchester stadium. "If you were a TV, I'd take you back to the shop" was his comment. This made a lot of sense, and I needed to see my GP about something minor anyway - I needed a wart removing from my lip. I could always mention this weird stuff at the end as an aside.

I saw a locum GP - Dr E. It turned out that the wart was the least of his concerns. He did various tests. I had my reflexes tested, I watched his finger move left to right, I stood on one leg, I touched my nose then his moving finger then my nose and so on. He booked me in for an emergency CT scan at the Hallamshire Hospital in Sheffield - I should get an appointment within the fortnight he said. He thought everything I was experiencing was connected somehow, but wouldn't be drawn on what it might be apart from that it might be something pressing on my spinal cord. "Basically, where my expertise ends, someone else's begins..." were his words. "Take it easy, don't do anything strenuous, no heavy lifting, look after yourself, be selfish, let others take the strain for a while." A GP has never said anything like this to me before, my previous visits had always been met with a "don't worry about it, it'll go away" air about them.

I thought of the heavy suitcase that I had to load and lift into the car, ready for our family holiday in a couple of day's time. "I'm going on holiday at the weekend." I explained.

"Where are you going?"


"That's good. They have hospitals down there."

"You've got me worried now," I laughed. . . no flicker of a smile on Dr E's face.

As I left the surgery, I felt the weirdest sensation. Something other-worldly, like I had been given a serious secret assignment.

I had a door with what could be a monster lurking behind it. All I had to do was find the key.

Part 2 >

Weird new symptom alert!

I was lying in bed on Saturday morning, enjoying a rare lie-in (7.30!) when my right foot suddenly became hot - then it switched itself off again to it's normal temperature. It then switched itself on and off three or four more times instantly turning hot and then normal again until I decided to get up and fix breakfast.

It hasn't done it since, but this is a new one for me and I expect it will probably happen again at some point. The whole thing was very peculiar, but because I know the reasons why this sort of thing happens it doesn't freak me out.

When I first developed MS symptoms, I expected something a lot worse and I noticed every twitch of a muscle, every tingle, every hyper-sensitive patch on my body, but when I was given the label of MS that I could slap on everything I was experiencing, I was more able to cope.

Thursday, 11 December 2008

Uninvited MonSter

People talk about fighting MS, there's even a Facebook group (of which I am admittedly a member) titled "Fight Multiple Sclerosis" but I don't know if I can agree with that. I don't think you can fight it, better to learn to live with it, accept it is happening and live your life regardless.

I often think that having MS is like having an uninvited monster (mine resembles Sweetums from the Muppet Show) living in your house, sitting on your chest as you lie in bed in the morning, following you to work, demanding a piggy back when you are walking up hill etc...

It's impossible to get this monster to leave - it's here to stay so better to try and house-train it. Tame it a bit. Tranquilise it with drugs. Learn some techniques to manage it - that sort of thing.