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.

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Dental mentalism

I went to the dentists yesterday.

I love the dentists.

I am seen by student dentists in their final year at university and because of this, I a) get free treatment and b) get some of the most careful attentive care possible. Everything is double-checked by a doctor from the university dental school and ninety-nine times out of a hundred they agree with the opinions of their students.

Over the last year and a bit, I have been seen by five student dentists, *ahem!* cutting their teeth in the real world (sorry). Apparently my gnashers are beautifully clean, and amazingly, it’s rare for them to treat someone with a full set of their own 32 adult teeth. I also like to think I’m a good patient, so we get along fine (I swap stories with the nurse regarding our children). Early on in their placements the students are understandably nervous, but soften up like ageing fillings after a number of visits.

I have been treated for hereditary gum disease over my course of treatment and this is finally starting to clear up. Except for one 10 millimetre pocket next to one of my back teeth. This means that there is a void where my gums and teeth don’t connect for a whole centimetre down into my jaw.

I will have to have this pocket and the surrounding teeth deep cleaned to give the gums a chance of re-attaching and healing up. I will also have to have three small fillings. Three appointments in all should cover it.

What’s this got to do with MS? I hear you ask.

Well, most people have a local anaesthetic for deep pocket cleaning. I will request to forego this. I’ll just grit my teeth (sorry, again) and bear the pain. I know I can do it, I have done it before, albeit down to about 6 millimetres.

The reason is this: I am fed up with numbness and weird sensations. I have plenty of that to deal with on a daily basis. Also, I have developed such a high pain threshold these days, that I am prepared to endure the few minutes of sensitive sharp cold bone and nerve pain of the dentist than have a morning of slack-mouthed numbness and tingling. I may even see if there is a chance of doing the same for the fillings, but we’ll wait and see on that.

I don’t think I am being particularly “hard” or macho or anything. I think the psychology of the dentist makes you expect the pain to be worse than it actually is, in the same way that a wasp sting is in no way comparable to the panic stricken flapping and shrieking people make when one of the little creatures enters their airspace.

Don’t get me wrong, it will hurt…

…I’ll just have to grin and bear it. 🙂

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.