One year on ...

Today is the first anniversary of my diagnosis (see MS History - part two).

Health professional bodycount so far.

Starting with the first GP visit last year, the bodycount is as follows

• GPs 4
• Practice Nurses 2
• MS nurse 1
• Ward nurse 1
• Occupational Health nurse 1
• Phlebotomists 6 (estimate)
• Physiotherapists 1
• Neurologists 5
• Neuro-psychologists 2
• Radiologists 4

If you consider the medication as well, I have probably cost the NHS more money over the last year than some of it's employees.

Symptom recap:

Current symptoms:

• mild optic neuritis (since Jan '09)
• doublevision / nystagmus / intra-nuclear opthalmoplegia / oscillopsia
• fatigue
• tingling / pins and needles
• neuropathic pain in legs

Symtoms that have cleared up for now:

• L'Hermitte's sign
• vertigo
• muscle weakness
• involuntary muscle movement

Of the current symptoms, the fatigue and optic neuritis aren't quite as acute as they were at first onset, so I feel much better, relatively, than I did last year. I think it is important to stress that I still have bad days, though (I nearly fell asleep in a meeting yesterday). Things are also helped by friendlier medication.

My MS History - Part Five

For the story so far, see Parts One, Two, Three and Four

Between visiting Dr G and Dr Sh, I needed to do my research and also go for a lumbar puncture. I reacted badly to the steroids and as far as I can tell, they didn't do me any good.

After diagnosis, you enter a whole new world. Support networks are everywhere. The MS Society and the MS Trust sent me reams of free information to get my head round. I joined the MS Society and spent an hour talking to the local rep over the phone. The web is awash with discussion forums. I was assigned an MS nurse - H - who was to become my contact with the hospital as well as a source of advice and information. She came to visit me at home. I also had a meeting with one of the Occupational Health Nurses at work and the Disabled Workers' Group in my workplace also corresponded with useful and supportive advice.

With the information at my fingertips I was able to piece together incidents from my past and build up a picture of my MS history. The most interesting find was a diary entry from mid-2004 that documented "everything that has gone wrong with my health since starting work at (my employer)" This modest list was as follows:

• vertigo. My local practice nurse told me this was some sort of postural hypotension because it occured when bending or lying in certain positions. I had a mental image of my aorta being squeezed, every time it flared up.
• eye problems. I had flashes and flickering lights in my vision and pain when looking round. I went to my GP, an optician and eventually my local hospital as an out-patient over this and was told that I had symptoms consistent with a detached retina, but apart from that , they were stumped. I can picture the present-day Dave, in a white coat, leaning over the opthalmologist's shoulder: "Hmmmm.... how about optic neuritis??"
• a four week headache that wouldn't shift with painkillers
• pins and needles on one side of my head.

So there you had it. I had unwittingly documented my first major relapse.

Evidence of further MS activity crops up in other diaries. My 2007 diary, for instance, documented a nasty spell of vertigo and showed evidence of fatigue where end-of-the-day diary entries spouted random gibberish and spiralled off into unintelligible squiggles.

The lumbar puncture wasn't too bad. The nurse performing the procedure reminded me of someone I knew, so that put me at ease. The local anaesthetic being administered was the most painful bit. I felt the pop of the needle entering my spinal column and I was surprised to see that my cerebro-spinal fluid was completely colourless. Other than that I didn't feel any discomfort. Everything had been explained in great detail. I remarked that I had pulled a muscle round lumbar number 4, six years previously and the nurse commented that it was still rock hard and impossible to get the needle through. She did physio for one of Sheffield's top sports teams, so I guess she knew what she was talking about.

I was one of the 10% of puncturees who had bad headaches for the next few days and on the third day afterwards (my third day in my new job), I vomited.

Seeing Dr Sh was a world of difference from Dr G. He popped in to yet another session of symptom observation with students in tow, listened to his registrar (who amusingly became all flustered) and declared that I had obviously had active Relapsing Remitting MS, that I had probably had a few relapses that year already and that we should put me on some disease modifying drugs as soon as humanly possible.

I had one of those amusing moments like the good vibrations in the MRI. Dr Sh, his registrar (Dr T) and two students wanted to see how my eyes were moving, so while I followed the path of Dr Sh's pen, I was aware of four pairs of eyes leaning forward and concentrating closely on mine.

One of the marvellous things about a neurological diagnosis is that you get to see the MRI of your brain. It is an odd experience and, probably because I was in a vulnerable spot emotionally, quite moving seeing it nestling snug inside the thin skull wall, also... dare I say it as an agnostic... an almost spiritual experience.

part 6 >

Relapse spotting

Well, I guess this goes to show how difficult it can be to spot a relapse, sometimes.

I spoke to H (my nurse) today about the optic neuritis and heavy legs that I have been experiencing over the last few days. She thought the optic neuritis sounded like I was experiencing a small relapse, but the heavy legs and the 'cactus gloves' I am wearing may be related to coming off Gabapentin.

I am to "take it easy and see how I get on"

I thought I would make a list of things that had flared up over the last month or so:

• optic neuritis - lights in my vision (currently) and pain when moving my eyes (last Friday to Sunday)
• stiff heavy legs - currently finding it difficult to walk (up hills especially)
• foot switching itself on and off repeatedly - hot then normal then hot etc. (before Christmas)
• the same foot going excessively cold
• occasional tinnitus - right ear (since early December)
• dizziness - no vertigo head rush, yet, but I lost my balance a couple of times today and either bumped into things or nearly fell over
• my head has gone tingly a couple of times
• I felt very lethargic on a number of occasions since the New Year, but nothing I would class as chronic fatigue
• an increase in the amount of insects who seem to want to escape from my feet

I can go to hospital to be checked over and prescribed more steroids if I need them. I don't really want to do that, though. H also advised that I take some time off if I feel any more crap than I do now, and I don't really see that happening either.

Strangely, as I typed this, I experienced a tightness across my chest that may or may not be the "MS hug."

Relapse??

I'm a bit worried I might be starting to relapse again. My optic neuritis seems to have returned in my left eye - I have been having speckled lights in my vision and pain when looking round. So far, only one large white phosphene. The other day my head went tingly as I drove home from work and I've had the hot cold feet and quite a severe flare up of leg pain (the ants / woodlice trying to get out).

If it's still a concern on Monday, I will phone my nurse and ask her advice, though the optic neuritis doesn't (so far) seem as bad as 2004.

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.