The eyes of the monster – part 2

Well, I went to see the eye surgeon.

The upshot of my meeting was that I’m not going to have an operation to correct my doublevision. I decided that it wasn’t worth it because I have what he termed a “complex squint” and any correction to my doublevision to the left would be offset by new problems to the right. The surgeon said he could perform the operation if I wanted it and give me single vision looking straight ahead but he couldn’t cure me.

I decided that I would rather stick with what I’m used to and avoid an unpleasant operation with its uncertain aftermath.

There is, of course, the consideration that my eye movements could be affected again by a future relapse and undo everything the surgeon did.

At least I can stare out the monster with my prism lenses. They’re not perfect, but they iron out my straight-ahead vision when I need them to. They have their drawbacks in that they’re not very good with computer screens as they blur the text and they’re not very good with bright light (direct sun or car headlights) as they tend to splinter any brightness into vertical lines.

The extent of my problems as they stand is as follows: I see double from the centre (I hold my head slightly off kilter to make up for this, apparently) and to the left. This gets worse as I look further to the left and I get a little nystagmus (flickering eyes) to the extreme left.

Rather than screw up one eye, I either turn my head or trust the image from my right eye and mentally switch off my left eye image when I look left, which is odd because my left eye is a little bit sharper than my right one..

I see single, slightly off centre to the right and then it doesn’t take long before I get a textbook case of very noticeable nystagmus (surgeon to student yesterday: “take a look and note that for your finals”) coupled with not so extreme doublevision to the extreme right.

When my eyes look up and down in the single vision field, they’re fine and when I look left and right, my eyes travel at slightly different speeds – there’s a little bit of lag in my left eye.

If the truth be known, I have to say the meeting answered a lot of questions and I’m relieved I don’t have to go through all that.

The eyes of the monster

Regular readers may know that I have had doublevision ever since my last big relapse in 2008. Every time I look left I see double. Looking straight ahead I’m fine and looking to the right, results in a textbook case of nystagmus (shaky eyes).

Doublevision is the reason I saw my GP in the first place. It coincided with a lot of other symptoms I was experiencing at the time, but I think if I’d had a severe case of tingly hands and feet or fatigue, I’d have probably let it ride. Doublevision is a more concrete sign that something somewhere is well and truly not right.

Back in 2009, I went to see my local orthoptist at my hometown hospital, to see if I could get some corrective prism lenses. Despite doing various tests all afternoon, and despite the fact that I only wanted lenses for specific situations, I was turned down. Apparently my 20/20 eyesight was too good to ruin with lenses, albeit plain glass ones.

At the time, it affected me more than I had expected because I was very surprised 100 yards or so later down the road to find myself suddenly bursting into tears.

I think this is the one and only time I have ever been truly upset about having MS.

But it’s the helplessness of the situation that does it… Yes it’s being turned down for something small that could considerably improve my quality of life and yes, it’s being patronised by a grinning medic demonstrating how to turn my whole head if I want to look left. But the one thing that really bugs me is that it’s always there and it’s always the same and I’ve had to get used to it whether I like it or not.

Today, I feel slightly different to how I did yesterday. I was more fatigued yesterday, and I was clumsier. My fingertips were more tingly and I had a bit of pain in my legs which I don’t have, so far, today. On the other hand, I have been having some muscle cramps today that I didn’t have yesterday. I find I have to take my MS on a day to day basis. Over time, it’s been more or less the same, but the symptoms ebb and flow subtly all the time.

The doublevision doesn’t do this. There’s been some permanent damage somewhere in my brain stem, so that when I look to the left there’s always the same displacement.

I’m looking directly into the eyes of the monster.

It reminds me how futile it all is and how helpless I am. The doublevision is a constant reminder of how my life has irreversibly changed.

Anyway, moving on two and a half years, I brought the orthoptics experience up with my non-plussed neurologist at our yearly meeting. “Would you like a second opinion?” He asked.

“Oh! Erm… yes please!”

“With our guys or the guys at [your hospital]?”

“Definitely your guys.”

“OK, I’ll write them a letter and we’ll get you seen.”

Four weeks later and I arrived at the eye clinic at Big City Hospital expecting to fight my case. I had drilled myself with the things I wanted to say about how prism lenses would make a difference when driving, or at the supermarket, or in meetings, or watching late night telly, and so on.

My first surprise was that I turned up 20 minutes early and was seen straight away.

The second surprise was the opening gambit from the orthoptist: “OK! Please take a seat. Today we’ll look at your eye movements. We’ll get you to look through some lenses. I’ll take some measurements and we’ll consider some treatment options for you. But today we should get you fitted out with some prism lenses to take away with you.”

Wow!

“Are you sure?” I filled him in on my previous experience including the turning my head to the left demo, how they had made me feel and how I was told it would strain my eyes and so on.”

He just shook his head and smiled in an ‘absolute nonsense’ kind of way. “No, that’s not true, we’ll try you out with some prisms.”

After that we got on like a house on fire. I learnt a bit about eye physiology as I had lens after lens passed in front of my left eye and he explained about the muscles that control my eye movements.

The upshot of it all was that I have some rather lovely NHS specs with prisms on the left lens which improve the doublevision only slightly in terms of the field of single vision, but massively in terms of  everyday practicalities and, perhaps more importantly, morale.

After my appointment, the morning sky looked a brilliant blue, the sun shone off the windows of the hospital towering above me and everything seemed different. I had been listened to and I had the result I wanted without having to battle for it. The world was a better place and again, I felt a little emotional.

That was all about six weeks ago. I have a follow up appointment this Tuesday followed directly by a meeting with an eye surgeon to explore my options (I’m thinking that these options will involve detaching and reconnecting eye muscles). Of course I have a whole raft of questions I need answers to, if I’m to go down that route, but I’ll keep you updated with whatever happens.

I might be staring into the eyes of the monster, but this time it feels like I’m staring it out.

DVLA update #3

If you are a regular reader of this blog, you will be aware that my driving licence officially ran out at the end of March as I have to have it updated every three years.

You will also be aware that I don’t have my shiny new licence yet due to the DVLA Medical Group making an admin error. An error that they have since apologised for. I likened them to an office of chimps a day or two before the apology, for which I am also truly sorry.

A day or two after the apology I received another letter from them advising me that they were contacting my neurologist and that this should sort everything out, but that it could take up to six weeks. That was back at the beginning of April.

It’s now six weeks later…

I have received another letter from the DVLA Medical Group stating “the information you have given us tells us that you have double vision (sic) so therefore we require you to complete a further questionnaire which is enclosed.” They go on to note “this questionnaire may appear similar to the one you have recently completed,” one? Try three, “but will provide us with important information from you that we currently do not have.” They then go on to tell me that I have 21 days to fill in the form, or else.

Actually, they do have all the extra info, because it is identical to the info I gave them three years ago. I wonder if the original form could ask if there has been any change in my medical circumstance since 2009, or maybe the original form could be reworked to be more comprehensive in terms of do you have eye problems, if not, go to question 6.

Or maybe… MAYBE… shock! horror! they could provide a secure online form that I could fill in from the comfort of my settee. They seem to be fine with me filling out my tax disc renewals online, why not my medical info? Then it wouldn’t matter how long the form is, I could tick a box to say a certain section isn’t relevant and be redirected to the next section.

Yes, it certainly could be a lengthy form, but it wouldn’t get lost and I wouldn’t have to fill it in four times, and it would presumably get processed a lot quicker.

Then comes the uncertainty. They want to know how I control my doublevision when driving. It’s a fair question and one I get asked by almost everyone when they find out about it. The stock questions and tickboxes they provide are: patch, glasses/lenses, prism or other.

I fall into the “other” category. I can’t help but feel that if I tick the “patch” box I’ll be off the hook, home and dry, scott free. The truth of the matter, however, is that my doublevision occurs when I look left so I don’t need a patch because most of the time I look straight ahead or to the right when I’m reading, and regular readers will know that I was refused lenses on the grounds that my eyesight was too good.

The way I control my doublevision is… wait for it…  

I turn my whole head to the left when I look left, or I close one eye. There. Simple …and probably a hundred times safer than wearing a patch as I have an all-round awareness of my environment that I wouldn’t have with a patch.

This solution seems to amaze most people as if it would never have occured to them.

Now I have another nervous wait to see if this info amazes the DVLA as well.

In the meantime, fingers, toes and eyes crossed…

Mild relapse?

I have been on beta interferon (Rebif) for nearly two years now and in that time I haven’t had a relapse.

Or have I?

Beta interferon is supposed to reduce the likelihood of having a relapse and minimise the effects if you do get one. Back in January 2009, when I came off gabapentin, I experienced a temporary worsening of symptoms such as fatigue, pain, heavy legs and one instance of flashy lights in front of my eyes. Was it a minor relapse as the neurologist thought? Was it the side-effects of coming off the gabapentin? Or was it the underfoot rumbles of the MS volcano?

I don’t know. I suspect all three depending on when you ask me.

I have a similar thing going on at the moment. In addition to the usual symptoms, I have had a couple of weeks where I have had a worsening of pain in my arms especially, mild spasticity in my left arm and both feet, hands that feel as if they are gently transporting a cactus as opposed to the usual background tingle, heavy legs again, fatigue, mild vertigo, uncontrolled movements in my calf muscles and last night, definite phosphenes in my right field of vision as I moved my eyes around.

So is it the hot weather?

Is it the MS Monster rolling over in it’s sleep?

Or is it a mild relapse?

I’m not inclined to bother anybody about it until my next yearly meet up with the neuro. My neuro is “running late” this year, apparently. Running late in the sense of he can’t see me in June as would normally happen, but will be able to when his appointments begin again in August, and the 115 people in front of me in the queue have been seen first.

In the meantime, I have restarted taking the amitriptyline.

Eye and blood appointments

I went to see the opthalmologist and orthoptist last month as a follow up to my December 2009 appointment. It took 65 minutes of waiting in a waiting room  before I was eventually seen.

Everything is fine with my eyes – pressure, field test, colour vision, optic nerve are all OK. Yes, I have had optic neuritis in the past but it has healed to such an extent that the opthalmologist said she couldn’t have told I’d had it, prior to me mentioning it.

“I have never known any MS patient go blind from optic neuritis …Not permanently …Not yet” were the opthalmologist’s words of comfort.

Apparently my pupils are sluggish to react to light or it’s absence, but are sluggish at the same rate, so I don’t notice.

I’m also assuming my blood is OK after not hearing anything about the routine blood test I had last month.

I guess the next medical appointment I have to look forward to is a trip to the big city in June to see my neurologist.

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.

Giving in

View of East Moor, Derbyshire - 8 January 2003

View of East Moor, Derbyshire - 8 January 2003

Yesterday I gave in.

I rang work to say that I couldn’t make it to the bus stop (one mile away up an icy hill) because of the weather.

In January 2003, I put my books to one side (I was doing a masters degree at the time), donned my walking boots and headed out of the front door to go for a twenty mile circular walk across the snowy moors.

I was pondering my future at the time, so I was in limbo as far as starting a family, or gaining proper post-graduate employment was concerned. My most immediate worries were house-hunting, coursework and finalising a dissertation topic.

My feet had instintively led me along a route I had planned on the map and imagined in my head numerous times as I had lain in bed at night.

I spent a happy day winding through local farms, along lanes that linked nowhere with nowhere, through copses, across the moors, past prehistoric barrows and back via a middle-of-nowhere pub.

I remember one particularly cool moment dangling my feet over a gritstone edge, watching the sun breaking on distant snow (see picture) while exchanging texts with a friend in her central London office.

I made it back as dusk was setting in, the fiery sun anchored to the horizon, mirroring my rosy-cheeks, satisfied and happy with the exercise-induced endorphins doing their thing.

I felt rather wistful watching the thaw setting in, dripping the branches and slushing the roads.

“That’ll be the last time I ever do that,” I muttered, quietly resolving to prove myself wrong.

Since then, a few milestones have been passed: I (post-)graduated, got married, found a job, bought a house, had two kids, lost my mother, extended my house, found a better job…

…got diagnosed with MS.

All this time, I have held onto the thought that one day, one distant crisp white snow day, I would do it all again. I would brush off my walking boots, wonder at the previous walk that had caked the mud into the soles, layer up, pull on the pack full of the day’s essentials (map, sandwiches, hip flask), and set off again across my beloved Derbyshire countryside.

Yesterday I couldn’t even get out of town.

Halfway up the local hill, the snow and ice got the better of me. Oscillopsia set in and my legs felt like lead.

Phoning into work felt like I had given up, like I had lost a key battle. For the rest of the day my legs and feet nagged at me in the cruellest way possible by feeling like they actually had walked twenty miles, but without the endorphins to show for it.

Still, I’m the optimistic type.

Part of me knows there are other factors involved – I had worn myself out after abandoning my car to the snow the day before. I had also walked, with a sledge in tow, the four and a bit miles – there and back – to pick up my kids (actually, I cheated and we caught a bus some of the way back).

I may have lost this battle, and I know that ultimately I will lose the war (how heavily or lightly remains to be seen), but there are other battles.

I am resolving again that when the kids are a bit older and I have the spare time, I’ll be taken with the urge and I will head out again across those hills.

I’m planning it now.