Hindsight

My first big relapse was in 2004 with a numb face, a headache that wouldn’t shift, optic neuritis and vertigo.

It’s strange to think of it now, but the medical profession couldn’t explain the cause at the time. Probably because I presented the symptoms individually, rather than all in one go.

I then experienced a few more symptoms in the following few years that tied in with the diagnosis of my MS in 2008. This was when I had the mother of all relapses that left me with the doublevision I have today.

Because of the missed diagnosis, I’ve often wondered when the start of my MS really was. Until recently I believed it was 2004.

Now I’m not so sure I can put a date on it.

In the late eighties, for instance, I had some very dodgy visual symptoms that tie in with optic neuritis and Uhthoff’s phenomena as they followed midsummer cross country runs.

Then I remember there’s a bit of a gap between 1987 and 2004. Seventeen years with no symptoms at all…

…but last night I found some evidence to the contrary.

If you ask my wife, she’ll verify that I’m a bit of a hoarder (I prefer the term self-archivist). I was sorting through some old papers in my loft last night. Among them were some old pay slips, timesheets and sickness forms from when I lived in London. It was in the sickness forms that I discovered a referral to my then occupational health department in 1998.

The reason? Doublevision!

This, of course, is the very symptom that returned ten years later to make me seek serious medical advice.

Not just doublevision though, eye pain too, which sounds like a dash of optic neuritis thrown in to me.

I only have vague memories of all this, as this happened fifteen years ago. I seem to remember a workplace assessment giving the reason as eye strain, which explains why I didn’t pursue the 2004 wierdness when that’s how it was explained to me again.

It does lend some creedence to the idea that my MS is a lot older than I, or my doctors realise. It effectively expands the timeline by six years.

My mission, now, is to find further evidence. To see if I can fill in the gaps between 1987 and 1998. I kept a diary on and off in the late eighties and early nineties, and I have a box of old letters, so I’ll be interested to see if that brings anything to light.

I have a few unexplained medical issues that are still a bit vague in my memory from that time, so I suspect it might provide a few enlightnening memories.

It won’t change anything, of course. It won’t change my current situation and it won’t inform my treatment. One thing it will do though, is satisfy my curiosity.

It will have contributed largely to the person I am today.

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Relapse

Just thought I’d let y’all know that I had a relapse in the last couple of months.

It mainly involved vertigo and dizziness, so I spent a good couple of weeks crashing into things, nearly falling over, feeling nauseous and actually vomiting a few times. It also involved some fatigue, L’Hermitte’s and a not unpleasant hot sensation near my right ankle.

GP reckoned it was labyrinthitis to start with, so he gave me some drugs for that, to see if they worked even though my MS history has been peppered by vertigo. They didn’t, of course, so instead of going back to him, I went to my neurologist. One Dix-Hallpike manouevre later to eliminate BPPV and my first relapse for three years was confirmed.

I was prescribed steroids, but I didn’t take them in the end as I felt I was getting better and I didn’t fancy a week of the side effects.

Thinking about my GP, I asked my neuro about the possibility of an ear infection…

“Can you hear that?” rubbing his finger tips together next to my right ear.

“Yes.”

“And that?” next to my left ear, this time.

“Yes.”

“Do your ears hurt?”

“No.”

“Then it’s not an ear infection.”

So there you go. It was inflammation of the balance centres in the brain stem apparently. I’m very much better than I was, though I did have a funny turn yesterday so I reckon it’s there in the background somewhere.

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.

In a rare moment of symmetry, my car passed it’s MOT a day later only needing a headlight adjusting.

My MS History – Part Six

After one more session of double-checking with the consultant where he had yet another student in tow – it seemed I was becoming a textbook example of nystagmus – it became apparent that the steroids really hadn’t done their job. So to suppress my existing symptoms I was prescribed Gabapentin.

I had been given details of Disease Modifying Drugs (DMDs) prior to this meeting and using the MS Decisions website, made my choice which I was going to spend the foreseeable future taking…

… and then I made it again.

Rebif it was – sub-cutaneous injections three times a week but with the downer that it had to be kept in the fridge.

Eventually a large box with all the gubbins turned up along with my monthly courier. By all the gubbins, I mean travel cool-bags (one large, one small), rebijector (injection pen), supporting literature, diary, “passports,” sharps bin, injection site cushion (that I could heat or freeze), and the medication itself.

Two weeks at 8mg and two weeks at 22mg, and then I could expect a delivery of the 44mg syringes.

I have been relatively side-effect free, but I did get a couple of instances of flu-like side-effects with Rebif.

The worst day of side effects happened when I had the mother of all hot flushes. One January morning at 6am, I stepped out to my car in just a summer dressing gown, surprised that it was quite mild, only for it to be minus seven when I checked my in-car thermometer later.

The Gabapentin, meanwhile, had turned me into a zombie. Not only that, but a zombie who occasionally had disturbing hallucinations.

Being a vegetarian and not at all into human flesh eating, I decided to ditch these drugs, for the good of my (and everyone else’s) sanity. I had “accidentally” forgotten to take them for a number of days, and while my hands started to feel as though they were holding a cactus again and my legs started feeling like they were made of lead, I felt more mentally alert and alive. I hadn’t even reached the full dosage.

In fairness to gabapentin, I have since found out that I work with someone with on a much higher dose than I was ever going to take, who said that they have no side-effects at all with it.

I went to see my GP and while he was thumbing through his British National Formulary for a suitable alternative, I told him that I wanted to give Amitriptyline a go. He agreed and I have been on these ever since with no side-effects. They make me a little drowsy late on, but that sends me to sleep nicely. They also help with the leg pain and the tingling.

My MS History – Part Five

Between visiting the two consultants, I needed to do my research and also go for a lumbar puncture. I hated the steroids, they had the dual effect of causing severe heartburn, while simultaneously making me incredibly hungry.

At the time it seemed that they didn’t do me any good. Particularly as in the following weeks, I developed a rapid oscillation in my eyes when I looked right (nystagmus) and a strange creeping pain in my feet and legs which for all the world felt like they either wanted to curl up inside themselves and shrivel up or on other days like they wanted to run away on their own. The pain would start in the evenings or on hot days and when I was tired, as early as midday.

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 poorly head round. I joined the MS Society for a minimal fee and spent an hour talking to the local rep over the phone.

I found the web awash with discussion forums – some more useful than others.

YouTube seemed to be a mix of useful advice and people moaning about how ill they are.

I was assigned an MS nurse 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 my workplace also has a Disabled Workers’ Group who 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 four years previously 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 had told me this was some sort of postural hypotension because it occurred 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 pictured the present-day me, 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 MS relapse.

Evidence of further MS activity cropped up in other diaries. My diary from the year before diagnosis documented a nasty spell of vertigo. It also showed evidence of fatigue where end-of-the-day diary entries spouted random gibberish and sometimes 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 the city’s top sports teams, so I guessed she knew what she was talking about.

I was one of the 10 per cent 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 my new consultant was a world of difference the old one. He popped in to yet another session of symptom observation with students in tow, listened to the low-down from his registrar (who amusingly became all flustered) and declared that I obviously had active Relapsing Remitting MS, that I had probably had at least two relapses that year already and that he 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. The consultant, wanted to demonstrate to his registrar and his two students how my eyes were moving. I had intranuclear opthalmoplegia as well as nystagmus to demonstrate, so while I followed the path of his pen, I was aware of four pairs of eyes leaning forward and concentrating closely on mine.

I was also set up with a series of testing with the neuro-psychologists to assess the extent of any cognitive problems I might be having, and appointments with my local physiotherapist to assess bladder control. By the time these appointments rolled around, I was well into remission, and seemingly OK, so if anything they will serve as “a useful baseline” to assess any “future degradation.”

One of the marvellous things about a neurological diagnosis is that you get to fly through 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, is… dare I say it as an agnostic… an almost spiritual experience.

My MS History – Part Four

I had a job interview in two days time. With a rare evening free of what I called brain fog, I was sitting at home preparing a presentation for it. My wife, unable to take the wait, had earlier phoned my neurologist to press him for the results of my MRI. As I was staring at my notes he phoned me back.

“I have the results of your MRI scan… It shows some inflammation in the white matter of your brain and spinal cord…”

Here comes the bit where they let you break the news to yourself:

“When you saw my colleague, did she give you any indication what it might be?”

“Yes, she said there was the possibility that it could be MS.”

Quick as a flash: “Yes! It certainly looks that way.”

“Oh! – OK!”

So there you had it. It was MS. The consultant – not an MS specialist by his own admission – thought it was nothing to worry unduly about. He told me that there were “only eight to ten large lesions” (only??) visible in the scan and more in the way of tiny “insignificant” ones. I now know that one lesion in a crucial spot can be more debilitating than several lesions spread all over the place. This, he thought, looked like a case of benign MS and that I would be very unlucky if I didn’t go into remission and then get no further flare ups for years. Indeed some people can go for 20 years without a relapse, he told me.

Sighing, he didn’t think it worth me coming to see him at the appointed time the following week, but then conceded that I might have “some questions.” So the appointment remained.

I took the rest of the evening off from job interview preparations.

The following day at work, I broke the news to my workmates.

I had no quandary telling them as I had good working relations with virtually everyone. I have since found that talking about MS can sometimes be the best therapy. It can be an invisible illness, so a bit of awareness raising doesn’t go amiss, sometimes. I figured that it was probably better to be open about any problems I might be having in case I had a bad day, like the day where I had all but fallen asleep at my desk.

Everyone was very understanding and asked intelligent questions. All except my boss who pronounced that she knew someone with MS and that even when he lost the ability to walk it hadn’t changed his life much because (to the whole office, rather than me) “they got him a little buggy!”

I made a mental note that should I get a little buggy of my own, she would top a hit list of people I wanted to hunt down and run over.

I met the consultant a week later. I won’t go into the details of the meeting, except to say that he was uninterested and unengaged. The information he gave me was wrong. Things that I suggested were symptomatic of MS, like my optic neuritis four years previously, he disagreed with. He also said the mood swings I had been experiencing were me and nothing to do with MS.

He sent me and my GP a strange letter where he obviously hadn’t listened to a word I had said and pronounced that my symptoms were getting better and clearing up, which was news to me. It all left me feeling very angry and very frustrated, on top of feeling lousy anyway.

I did get three positive things out of my meeting, though: he prescribed steroids to kick-start the recovery and relieve the symptoms, he referred me to another consultant neurologist (an MS specialist) and most importantly, he made me determined to do my own research, to become an expert in my own MS and to build up a history so that I could stand up for myself and make my case for treatment.

One of the criteria for getting disease modifying drugs in the UK is that you need to have two relapses within two years before they will prescribe anything. All the research seemed to say that the earlier you can get on the disease modifying drugs, the better the long-term outlook.

My MS History – Part Three

I was now on the books of a consultant neurologist.

With my stomach tying itself in knots, I re-capped my symptoms with one of his grim-faced registrars. I spent 45 minutes undergoing the usual tests. I did my trick of not being able to walk heel to toe. I watched a pen travel in front of my face from left to right and back again. I had the soles of my feet tickled, and the tops pricked with a pin. My reflexes were tapped with a hammer. I had to read an eye chart, walk a distance in a straight line, remember a phrase, say what day of the week it was, resist having my arms lifted and pushed against… all sorts of tests to ascertain what was wrong with me and how serious it was.

Only when I returned to her office, did I voice my fears.

I was fixed with a stern look: “It’s not a brain tumour. Don’t worry.”

Instant relief… Phew!

Apparently there were a number of reflections on the CT scan which might, just might, possibly be inflammation caused by MS… Maybe… and if it was MS, which it might not be, to remember that a lot of people with MS lead long fulfilling blah.. blah.. blah..

MS!

Is that all!

I can deal with MS!

Hang on though, who do I know with MS?…

“Ermm… my old neighbour had MS, and she was a bit crazy, like talking to a little girl. No short term memory at all. Kept repeating herself…”

“blah blah… advances in treatment… every case is different… blah blah…”

It’s not a tumour then – I can deal with MS.

The upshot of the meeting was that further tests needed to be done before anything could be confirmed, starting with an MRI scan.

A couple of weeks later, I found myself in the MRI suite of the hospital, with all metallic objects removed and a new pair of cheap trakkie bottoms on (with the metal eyelets cut out of them) that I haven’t worn since. A number of pieces of paper were blu-tacked to the wall warning local ex-steel workers of the damage that might be done to them with a large electro-magnet and the accumulation of metallic dust in their systems.

The very amiable MRI bloke asked me if I wanted some music while being scanned: “Rolling Stones or Beach Boys?”

“Er, Beach Boys please.”

So there I was awaiting polarisation with headphones some padding and a metal cage wrapping my head so close it made contact with my nose.

“OK – this first scan will take two minutes, don’t worry about the noise, if you are uncomfortable or anxious at all press the buzzer”

Noise?

>>Poc Poc Poc… ZZZUM! ZZZUM! ZZZUM! ZZZUM! ZZZHING! ZZZHING! ZZZHING! ZZZHING! VAMM! VAMM! VAMM! VAMM! …good vibrations… she’s giving me excitations… GRRANG! GRRANG! GRRANG! ZZING! ZZING! ZZING! CLUNNG! CLUNNG! CLUNNG! CLUNNG!<<

Lying perfectly still, afraid to swallow in case it mucked up the scans, I spent an hour in a noisy white tube, a little claustrophobic, but OK because I could press a buzzer and I could occasionally exchange banter with the radiologist. All this, while the intricate inner workings of my head revealed themselves on a computer screen just beyond the window of the adjacent room.