It’s been a while..

I knew I hadn’t updated this blog for ages but I didn’t realise the last time I had anything to say was September 2015.

I’ve been busy caring for an elderly relative (now in residential care) and editing a poetry journal (now resigned), so I’ve either been exhausted or lacking the will and free time to exert myself with anything less pressing unfortunately.

My MS could also be described, to nick Viv Stanshall’s genius description of Rawlinson End, as ‘changing, yet changeless as canal water’, so it might be a year or two before I realise that anything has changed significantly enough to report on.

So what’s new? Three things mainly…

Firstly, I had a relapse involving optic neuritis about a year ago which kicked me into safe mode for a few weeks and I took some time off work. It’s a symptom that hasn’t really bothered me much for over ten years so for it to kick in was a bit of a shock (and painful to start with). All better now apart from a bit of noise in my vision.

Secondly, I’ve lost a stone in weight. I asked my GP to refer me to my local council-run sports centre a while back to try and get myself in shape. I didn’t have the time to do that, though, as already described, so I just put myself on a strict diet of my own devising. This seems to have worked. I’ve also recently taken to waking up at 5am to go for a run round my local neighbourhood (just a couple of miles each time). It’s a good time of year to do this as you have to keep moving to avoid freezing solid. The only other people around at 5am are milkmen, gritter drivers and people who either commute long distances or care about their careers too much, scraping the ice off their windscreens.

Thirdly, I was referred to my big city hospital’s urology department to sort my rapidly deteriorating bladder problems which were a massive drain (‘scuse the pun) on my quality of life.

I’ll cover the last two points in forthcoming posts – bet you can’t wait.

Until then…

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.

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.

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

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.

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.”