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.

Sod's law.

The last thing I did online last night was post on this blog about how good I was feeling after my run. As I turned the computer off I felt slightly nauseous, decided I wasn't up to ironing my work shirt for the morning and stumbled off to bed. Between bathroom and bedroom I developed the most extreme chill. I spent the next hour or two shivering uncontrollably and my joints ached like crazy.

I had injected with Rebif about an hour before onset, so this must have been the side-effects. I have been injecting with Rebif for five months now and have only experienced mild reactions so far. Most of the material I have read states that side-effects are worse in the first three months before tailing off, but I guess this shows they can flare up at any time.

Feel like I could fall asleep at any moment.

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.

My MS History - Part Six

For the story so far...

• Part One
• Part Two
• Part Three
• Part Four
• Part Five

After one more session of double-checking with Dr S 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. As you can read elsewhere on this blog, gabapentin turned me into a zombie. Being a vegetarian and not at all into human flesh eating, I decided to ditch these drugs at Christmas 2008, for the good of my (and everyone else's) sanity.

Parallel to this, I had been given details of Disease Modifying Drugs (DMDs) prior to this meeting and using a slightly out-of-date MS Decisions website, made my choice which I was going to spend the foreseeable future taking...

... and then I made it again.

I had a choice of four DMDs, either Glatiramer Acetate (Copaxone) or one of the three Beta Interferon drugs - Rebif, Betaferon or Avonex. The choice was more of a case of elimination as none of the drugs stood out as being the obvious choice.

Copaxone was rejected because it was a daily injection and I didn't fancy the possibility of panic-attack style side-effects. It also hadn't got the clinical trial track record of the Beta Interferons.
Avonex was rejected because it was an intra-muscular injection and once a week. I wouldn't say that I was frightened of needles by any stretch of the imagination, but I didn't fancy dreading the one day every week where I would need to plunge a two inch needle into my leg muscle and then enduring any side effects over the weekend.

Betaferon was rejected because I felt that mixing the drugs every other day would become a bind. I downloaded videos off YouTube and these backed me up - too much of a faff.

So 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 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 to say that I did get flu-like side-effects with Rebif, but it's a case of knowing when to take them. I noticed that it took a while before any nastiness kicked in, so if I remember, I take them relatively early in the evening and then sleep through the after-effects. I also take them on Sunday, Tuesday and Thursday to keep the morning-after hangover in the more-managable work environment and away from family quality time. The worst day of side effects happened when I had the mother of all hot flushes, stepping out to my car at 6am in just a summer dressing gown, thinking that it was quite mild, only for it to be minus seven when I checked my in-car thermometer later.

I found that the side-effects became less severe after about three or four months and if I get any side effects now, I don't notice them.

All-in-all, I have been quite lucky with Rebif. Nothing as bad as the horror stories I have read in online discussion forums. Of course, it's early days and it remains to be seen if the drugs do their job of slowing down the disease's progression.

2009 update >

Time off

I've been feeling pretty good since my last post. Not affected by the Rebif much at all. Tonight it's the turn of my belly to get the jab. Possibly my least favourite jab site. It always hurts, despite being the site with the most fat to plunge the needle into.

I really must start running in the new year. I gave it up a year and a half ago when my youngest daughter was born and a relapse and diagnosis of MS put it on the back burner for a while. I heard someone quote once that if you give MS an inch, it will park a truck in it, so I'm not going to give it an inch... I'll run the risk of Uhthoff and fatigue and I'll work that belly off. I am a stone heavier than my "comfortable" weight and about a stone and a half heavier than my target weight.

The girls are off to Manchester to visit friends and family for a couple of days, giving me some "time off," though if you think of time off as me putting my feet up, think again. I have a couple of rooms to clear and a wooden floor to clean and varnish. I also have a few other DIY jobs up my sleeve as a (pleasant) surprise for when the girls come back.

Even though I can hear the reversing beeps of a lorry and my MS MonSter leaning out of the cab window waiting, I know I mustn't overdo it. I am a world class procrastinator and I have a film to watch (4 Months 3 Weeks & 2 Days), so I'm off to stick the kettle on...

The morning after... groan!

I felt very rough this morning. All my joints ached and I even felt a bit nauseous. I injected at 10.40ish last night. I woke at around 2am to see to one of my children when I felt groggy with sleep but fine otherwise. I finally woke up at 6.30 this morning and felt as though I had been hit by a truck. I guess this is the flu like symptoms. I also noticed I was sensitive to different temperatures. My daughter's cold hands and the too hot shower water both sent my nerves screaming.

Luckily I had a blood test this morning, so I didn't have to go to work so early and was able to go back to bed for 15 minutes after breakfast.

My blood made a nice squirty noise as it filled one of the test tubes. Both the nurse and I smiled. She said she'd had an 'interesting' morning collecting blood from the mental health wards saying she was always a little worried in this situation - that there might be gruesome noises to freak the patients out.

A combination of ibuprofen and paracetamol are helping me ride it out. My next injection is due on Christmas Eve, but I might delay this by a day - I don't want to be ill on Christmas morning.

Double trouble?

My jobs for this evening include stripping wallpaper, bathtime and bedtime for the kids, wrapping Christmas presents, going to the supermarket to stock up on festive goodies, shifting the sofa and covering it with dust sheets ready for the plasterer... oh! and shooting up with Rebif (left thigh night tonight).

Well it's full dose time, today. After a couple of weeks of Beta Interferon at 22 micrograms, I double it to 44 tonight. From what I have read on discussion boards etc, the side-effects should start kicking in from now on. Hurrah! I have already experienced the achey joints and the hot flushes - will I get them twice as often? Will they be twice as bad? Will I start getting the injection site reactions I have heard about?

Probably none of the above.

Only time will tell, of course.

Typically, I have forgotten to attend this morning's scheduled blood test and have apologetically re-arranged it for first thing tomorrow morning - the 'morning after' so to speak. Also, typically, the next injection is on Christmas Eve.

Life with MS - Part Two - Medication

I have been dosed up this year, like I have never been dosed up before.

I mentioned in an earlier post that having MS is a little bit like having an uninvited monster following you round everywhere (mine has been clinging onto my right leg all morning). In order to stop the monster from suddenly flipping and getting all aggressive on me, I need to give it some drugs. The main ones are:

Steroids:
The first drug prescribed was a massive one-off dose of steroids (methyl prednisolone). To give you an idea - patients with severe asthma are sometimes prescribed approximately 40mg of this steroid every day to combat whatever it needs to combat for them. I took 500mg per day for 4 days. This was in order to fight the inflammation in my brain and give my body the kick start it needed to repair the myelin damage in my brain and spinal cord.
Benefits: it cleared up a non-MS related dodgy knee
Side effects: bad indigestion for a week, nasty metallic taste in my mouth, short temper (just ask my family), increased appetite (despite the heartburn) and therefore weight gain.

Gabapentin:
This is an anti-convulsant normally given to epileptics, but can apparently help nerve pain in MS patients. I take it for the pins and needles, the ants under my skin and any other nerve-related pain that I am experiencing. I think it was supposed to help my eye problems as well. I am gradually working my way up to the full dose of these (900mg a day) which I should be on by Christmas - I am currently on 600mg per day.
Benefits: I am not up to full dose yet and it's still early days but I get the odd window of normal sensation in my hands every now and then and my L'Hermitte's sign has cleared up
Side effects: Drowsiness - I feel very sleepy in the evening and sometimes during the day. Hallucinations - I am seeing quite a lot of things that aren't there - I saw someone standing in a corridor at work the other day staring at me, when I looked again it was a filing cabinet - along with movement glimpsed out of the corner of my eye this is getting to be a fairly frequent occurence.

Beta Interferon:
I inject this under my skin three times a week (Mon, Weds, Fri). I am currently on a 22 microgram dose which is increasing to the full dose tonight (44 micrograms). The purpose of this is to interfere with and suppress my body's auto-immune system to stop it attacking the myelin around my nerve cells.
Benefits: supposed to increase the time between relapses and make each relapse less severe. It is too early to tell with me, but I'm glad I'm on it.
Side effects: Not up to the full dose until this evening which is when the fun supposedly starts, but I have already had achey muscles and hot flushes. I inject before bedtime so that I can sleep through any nastiness but I can feel a bit crappy on Tuesday, Thursday and Saturday mornings (aches and hot sweats). The injection sometimes leaves a bruise too.

Immunisations:
Because of my suppressed immune system I have already had my flu jab, and I am expecting to have jabs for meningitis and something else (I can't remember what).

Omega 3 for vegans and vegetarians:
I made a diary entry, just over a year ago where I equated taking Omega 3 with improved cognitive performance. I noted that I was more able to "think on my feet" and wasn't forgetting as much stuff. I think it probably co-incided with the start of a remission period, but I reckon it's worth a shot, so I have started taking it again.

Ibuprofen / Paracetamol:
to combat the effects of the Beta Interferon.

Of the drugs above, I may take the steroids again next year at some point, depending on my symptoms and the Gabapentin is under review. It is a "dirty" drug apparently so side effects are quite common. If my body gets used to it, fine, but there are other drugs I could try in it's stead.

Weird new symptom alert - update

The on-and-off hot foot sensation from the other day has now been replaced with an ice cold foot. For most of my drive in to work this morning my right foot felt as if I had been kicking snow around with inadequate footwear on.

I worry about my right foot and leg. I often think that in the unlikely event that I "lose" a leg - it's going to be the right one. Bang go my childhood dreams of playing on the wing for Man City.

I know I have at least three large patches of myelin damage in my spinal cord - the one that causes L'hermitte's must have been subdued somewhat but seeing as I'm having bad pins and needles in both hands at the moment and a seriously fuzzy leg I'm wondering if the increased dose of Rebif (beta interferon) is having this effect. Another increase in dose next week - oh joy!