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.

Experience of fatigue

Up to eighty-seven per cent of people with MS, including myself, experience fatigue at some point. It is important to us that people don’t think fatigue is the same as tiredness. It is the most draining experience imaginable and it can happen for no apparent reason.

I went to a talk by an occupational therapist the other night on fatigue and it’s management. As part of his presentation, he included quotes from some of the people with MS he has consulted with over the years.

I thought it would be useful to re-quote them here as I am sure these statements will resonate with the fatigued among us and go some way to help explain what it is like for others:

“Fatigue can literally reduce me to tears, for no reason, I just find I’m crying – it’s like the plug has been pulled out and my energy, almost my life feels like it is going down the drain…”

“I feel like I’m in a jail cell as I’m so tired all the time…”

“It feels as though my legs are full of lead, it’s literally like wading through treacle trying to do things…”

“It hits me like a wall and then I can’t do anything… There’s no real warning to it happening. Sometimes I’m not even sure if I’m awake.” (Oh boy, yes!)

“It’s hard to describe to someone that you’re feeling fatigued and tired when you’ve not actually done anything. I used to be so active.”

Prior to my diagnosis, when I was going through the darkest hours of a relapse, I had a number of afternoons at work where I had what can be best described as a waking sleep at my desk. It was deeply worrying to say the least and I remember the thought “What’s happening to me?” playing on a loop in my head.

Perhaps the hardest thing about fatigue is that it is invisible to everyone else. I’m not being lazy or unhelpful and I can still do everything I could do before, it is just that sometimes I can find everyday tasks exhausting.

Further information

• Fatigue factsheet (MS Trust)
• Living with fatigue (MS Trust)
• MS Essentials: Fatigue (MS Society)

Yearly neurologist meeting - 2009

Yesterday, I saw my neurologist's registrar - Dr Somebodyorother plus one student.

I had to recap my entire MS history from Day 1 again. I always find it difficult to remember the relapses prior to diagnosis as I didn't recognise them for what they were at the time.

I did my usual set of tests. I had my reflexes tested, walk/limped from one line of old red tape stuck on the floor to another one and back while he timed me on his iphone, I walked an imaginary tightrope heel to toe, I read the eye chart, I resisted the pulling and pushing of my arms and legs, I had my eyes examined and I watched his finger move from left to right...

...my eyes were flickering...

"Do you want to come and have a look at this?" as he singled out my nystagmus to his student.

...and back again as his finger became two fingers as if he was making bunny ears behind an invisible head.

Back in the consultation room, my regular uber-neurologist breezed in with a student in tow. He flashed me a grin and told me how well I looked (see pet peeves part one) and leant against a bank of xray lightboxes with chin in hand as the registrar recounted his findings. At the mention of nystagmus, he lurched himself upright and held his biro vertically in front of my nose. I dutifully followed the pen, demonstrating my wonky eyes to the second student.

Excuse me while I digress - I have no idea if my nystagmus is a particularly textbook example or whether nystagmus cases are hard to find, but it is always singled out to the accompanying student. So if you are reading this blog and you are a neurology student (or otherwise), it will be quite easy for me to post a film of my oscillating eyes on this blog. If you would like me to do so leave a message in the comments and I will be happy to oblige.

He also noted my intranuclear opthalmoplegia, which his registrar had missed (my left eye moves a bit slower than my right).

Anyway, summarising the meeting:

• I have only had one minor relapse in the last year, so the medication (Rebif) is working and I can continue with it.
• An appointment is to be made at my local hospital, so they can try me with prismatic lensed spectacles that may correct my doublevision (no obligation to take them).
• I have regained my balance. Good old self-healing magical brain. Standing up straight with my eyes closed, I don't keel over and I can walk heel-to-toe across a room neither of which I could do a year ago.
• I need an extra blood test to see how my system is coping with the Beta Interferon

"You're doing very well" grinned my neurologist (cheerfully disregarding my mentioning pain and fatigue) before fielding a couple of my questions, shaking my hand and breezing out again.

So there you have it.

All being well, I won't see him for another year.

Drug experiments

It's official, I have been told by my GP that I can experiment with drugs.

Well, actually, no. I have been given the go ahead to increase the dosage of the amitriptyline to try and weigh up the pros of pain relief and the cons of the drowsy side-effects.

The side-effects are something I have yet to experience, or if I have, they have become lost in my general background dopeyness.

The pros are that the pain I had been experiencing seems to have abated slightly - occuring later or only if I have had a strenuous day. Not a daily occurence like before. And if I forget to take my tablets for a day or two (like the night before last) I start to get a bit fuzzier round the edges, the shooting pain will start in my fingertips and the squeezing sensation will start in my calves.

Starting last night, I doubled the dosage.

The difficulty is - if it seems to work, is it the drugs doing the work, or is it the crazy unpredictable roller-coaster of MS giving me some time off before it turns on me with a snarl?

It is around this time of year that I have experienced my most debilitating relapses. Hopefully this year, the terrorist cell lurking in my body will notice the beta interferon in my system and decide it isn't worth the bother. This year, I will also be on the look-out, so I should be able to get some treatment when I need it.

Reading and MS

I used to read a book a week. Every lunchtime, I'd grab some fresh air and sit by the canal with the latest piece of weirdness that I'd picked up at Waterstones. Every evening I'd lounge with my face buried between the pages while my wife sat next to me watching telly.

That all disintegrated five years ago at the same time as my first major MS relapse. I had a stressful time of it, working in a new job that I hated and a newborn baby waiting for me at home. The stress probably triggered the relapse but I didn't really have the time to read anything in the evening, anyway.

These days, I really like the idea of reading but find that I simply can't. My MS makes it difficult to concentrate when I get tired and at the end of a day spent in front of a computer screen, my eyes will jump around. Any attempt to read more than the few pages I read to my daughter before bedtime requires great effort and sends me to sleep and the very prospect of reading makes me feel tired.

I have tended to substitute for it by immersing myself in films instead.

I am wondering if graphic novels might be a way of re-building my reading stamina. If I only have to read dialogue and the odd caption, it may take a lot of the fatigue out of reading and restore the enjoyment of a good book. It is something I intend to explore.

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.