Side effects and sleeping

Although the good people who administer by drugs send me text messages to remind me I still managed to forget to take my Avonex until around half eight on Friday evening (which is about an hour later than I aim for). I then stayed up watching TV which meant that I didn't get to sleep before the side effects kicked in. Ended up cuddled up with two hot water bottles and my dressing gown trying to get over the chills. It was probably early morning by the time I eventually fell asleep.

Fortunately when I woke up on Saturday there wasn't any 'left-overs' from the side effects but I still felt amazingly tired and extremely apathetic. I managed to do pretty much nothing for the rest of the morning and early afternoon, and then went to bed at three o'clock and slept through to eight! We stayed up until around half one in the morning (watching the Eurovision) and then I managed to sleep until half nine this morning; which is unusual as I usually wake up around eight even on the weekend. I got another few hours sleep in this afternoon from around two through six. Never have I had so much sleep without actually having the flu or something. Body obviously needed it.

News - Myelin Repair?

Although this is just the beginning of a long research road it gives hope that somewhere down the line there may be a way to repair damaged myelin.

Discovery of pathway that reactivate myelin repair

Back to not liking Friday

Fridays are the day of the week on which I have to take my weekly Avonex injection. Although I though when I first started DMDs that I would never be able to handle injecting myself (I routinely faint when I have to have a blood test) I have now been managing for two and a half years. Managing, but not really used ot it or liking it. The good thing abou the Betaferon was that although it was more frequent it used a little auto-injector so I didn't have to watch the needle myself. The Avonex although it is only once a week is a much (much) bigger needle and I have not auto-inector so I have to do it myself. The only solution is to take a deep breath and go for it. It actually doesn't really hurt or even mostly bleed. It is just seeing that great big needle.

No work today as it is Friday. Whilst I am physically able for it I find it very frustrating to only work a three day week. Mondays and Fridays are days on which I routinely accomplish absolutely nothing. Even worse at the moment as the depression seems to have settled over my brain like a fog and I really can't seem to do anything. I sat in front of the laptop for half an hour this afternoon trying to decide whether to read emails or read blogs and in the end I settled for neither as it seemed an insurmountable effort.

I've only been taking the anti-depressants for two days, so I suppose I can't expect them to be working yet... hope it won't be too long though - although apparently there is a 40% chance that they won't work at all.

Trip to the Neuro

Today was time for my regularly scheduled visit to the Neuro. It came on a good day as the appointment wasn't until nearly ten I got a bit of a lie in, which was much needed after being stuck in the office really later yesterday.

Of course I arrived at the hospital to find the waiting room heaving and the Neuro running over an hour behind schedule. I finally got to my appointment an hour and fifteen minutes late - and we went over the usual list of questions - how's bladder, bowels, vision, etc. etc. We discussed my walking and the stick and I pointed out that I could physically walk without it, just not balance. This lead to the conversation about how severe relapses could lead to permanent damage, etc. etc. Same old conversation ending up at the same old dead end conversation about Tysabri - which I still don't want to take.

We then moved on to mood. I told the Neuro that my mood wasn't too good; which led to further questioning about life situation (reduced hours at work my job sucks), was I worried about the future (yes but who isn't?), did I sometimes feel tearful or hopeless (is my life writing the Neuro's script?)... have not had such a frank conversation with him for some time. Diagnosis... depression; the funny thing is I've been so busy worrying about the Better Half and his teeth problems, and worrying about money and being stressed about my job I hadn't really given much thought to why I was feeling the way that I was feeling. As soon as he asked "Is it possible you are depressed?" I thought, yes of course, that is what it is. So, I get anti-depressants and a repeat visit order for every two months (so that they can keep an eye on me).

Depression is one of those things that people never talk about... there is some sort of shame or stigma attached, I suppose. I suffered from it when I was in my early twenties for a couple of years - and it was easily one of the worst and bleakest periods of my life.

It is hard to describe; the horrible desolate feeling of the pointless futility of just about everything (which manifests for me as an uncomfortable propensity to cry in public and innapropriate places)... the lack of motivation to do pretty much anything at all (reading books, watching TV)... the feeling of being trapped in treacle - it is so hard to describe. Then you look around and you think, things could be worse - what reason do I have to feel this way, and you feel even worse; a failure for not being able to cope with what life sends your way.

The biggest question of all... is depression a result of living with the results of MS or is depression itself caused by MS?

Feeling not so bad

Go figure, by rights I should feel awful today, but acutually I'm feeling quite good. I slept really (really) badly last night. I was having one of those 'my thermostat is broken' nights. I was way too hot, even though I'd left the bedroom window open all evening... I tried switching on the fan and even that wasn't enough. I eventually fell asleep - only to wake up after a couple of hours and switch the fan off. An hour later the same thing... and an hour later the same thing again. I know I switched the fan off each time I woke up so I must have been switching it back on again in my sleep. Operated by remote control you see, nice and easy to do... too easy it would seem.

I tried taking a trip without The Stick yesterday when I was out and about. I always do this just before I go and see the Neuro so that I can give a detailed answer when he asks me if I really need tTe Stick. I had an interesting experience wobbling around in the shops - like a trolley with a wonky wheel I have to steer myself to the right to counteract the propensity to fall over to the left. Lots of suspicious looks from fellow shoppers who I'm sure were suspecting me of lunchtime drinking! It has now been eighteen months with no balance improvement... actually, that isn't true. I'm a lot better now than when that relapse put me in bed... but I'm not back to where I used to be.

I guess, as with most things, it is going to be another case of the 'frog in the well' - two steps forwards and one step back, never quite arriving back where I started.

News - Steroids and Drugs

An interesting article about the use of steroids in combination with interferon drugs. I'm not sure about the prolonged use of steroids though as I'm always told that I can only have two courses in twelve months and that they can have adverse effects on stomach and bones.

HealthScout-Consumer Health News, Information and Resources Updated Daily-Men-Drug Combo May Relieve MS Symptoms

Memory games

My original intention for today was to take it as easy as possible to prepare myself for the busy week ahead which includes an eleven hour round trip to East Anglia tomorrow and a shortened day on Wednesday thanks to my Neuro visit.

However, I had to fetch and carry the Better-Half from his emergency dental appointment and then back to the Chemist a second time after we discovered they had only dispensed four-fifths of the prescription. I had planned to spend the afternoon sitting in the garden reading 'Inkdeath' after I had finished 'Inkspell' last night... but my concentration wasn't up to reading books. It wasn't up to playing 'Tomb Raider' or 'Fable II' - or anything very much. However I discovered that bite-size amounts of gaming such as the 'Brain Challenge' from the Xbox Live Arcade didn't overstretch my concentration at all. The most hilarious part of these 'brain training' exercises. I consistently got superb scores in Memory.

This is hilarious as my memory is abysmal at the moment. I forget that we have watched TV shows, I forget entire conversations... the other evening I gave the Better-Half a fiver I owed him when I got in and then tried to do the exact same thing fifteen minutes later 'before I forgot'. It would appear that as long as I don't need to remember anything for more than five seconds I am a genius... beyond that, best give me a notebook. I blame this entirely on my destroyed axons and neurons. I used to have an amazing memory... I was renowned for it. Not only could I tell you about an event that happened years and years before, I could probably even tell you what I was wearing. This is probably the most frustrating thing for me... it annoys me far more than walking with a stick. Losing chunks out of my brain like a dripping tap... and I don't think there are any pills that they can give you for that.

Itches and other things

The good news is that the crushing fatigue of yesterday appears to have lifted a little today. Perhaps all that rest has had a positive effect?

The bad news is that the itching is no longer being held at bay by the anti-histamines. It is taking a great deal of self control at the moment not to scratch myself until I bleed (which is the usual outcome of an itch attack). Still, I'd rather this than the utter of exhaustion of yesterday. I was beginning to think I might actually spend the entire weekend in bed.

There would some other strange things going on with my axons and neurons right now. There are lots of sharp little pains that keep pinging all over the place. At least they are transient, not like the horrible muscle pain that went on for four days last week. Happily it just so coincided with the four days that I didn't work so it meant I could sit in bed and not move too much. The entire muscle went rock solid, nothing helped... not heat, not cold - just eased by Tuesday having come on very suddenly on Friday.

The three days I am at work this week are looking massively busy, especially as I'm missing half of one of them with my Neuro appointment that couldn't be moved. Best take it easy tomorrow and make sure my body is fully charged.

News - Stem Cells

Stem cells are, by all accounts, one of the biggest steps forward in medicine in recent years. There doesn't seem to be much that can't be helped by them somehow... and MS is the latest disease to be linked with beneficial usage.

United Spinal Association Reports Positive Results Of Stem Cell Transplantation To Treat Multiple Sclerosis: Study May Be Key To Unlocking A Cure

The dreaded fatigue

I don't pretend to begin to understand how it is that the ravages of MS on my brain can cause such a wide variety of symptoms. Some of them you can figure... messages going awry due to demyelination (cue memories of Neuro and his explanations involving faulty wiring and clapped out cars). Nerves... muscles... I get it. The one that I don't understand is fatigue.

Anyone who hasn't suffered it can't really begin to imagine the fatigue that MS brings. It is beyond feeling tired at the end of a long day. It can't be cured simply by taking a nap (although that sure goes a little way to helping). It is a grinding, wearing exhaustion that goes through every muscle and bone. Every limb is so heavy that it is really too much effort to lift it and just trying to think what to do next, let alone actually doing it, is utterly exhausting.

The Amantadine that I take for fatigue seems to have again become useless... is it possible that I have become immune to it? I have only got out of bed a couple of times today... and most of the time that I've spent in bed I've just been sitting and dozing, can you belive that I'm too tired to even read.

Luckily I have a routine appointment with the Neuro next week, so the fatigue will be on the agenda for discussion.

News - Tysabri

Here's an interesting article. Interesting to me as my Neuro is quite convinced that I should be taking Tysabri rather than one of the Interferons. I've always been less convinced due to the link with PML which has now been re-assessed since the clinical trails which put the risk as 1 in 1,000 to 1.2 per 10,000. It still doesn't change my mind about taking the drug... to me any risk is too much risk, but interesting to read all the same.

Incidence Of PML With Tysabri In Multiple Sclerosis Lower Than Previously Thought

Where is your disabled toilet?

Quite often when I go out to bars and restaurants I find that it is easier to use the disabled toilet. There is a bad habit that eateries and drinkeries have of making the most of their valuable space by putting the toilets in the basement or on the first (or even second) floor. These are nearly always without exception therefore up or down steep and narrow flights of stairs. When you do eventually find the toilets the cubicles are usually tiny, making it next to impossible for me and The Stick to navigate.

So, I got over my embarrassment of asking the bar staff for the disabled toilet... and now I just get on with it. And what strange experiences this leads to sometimes. The law in the UK regarding accessible toilets is under the Disability Discrimination Act, and it requires only that businesses and other premises make 'reasonable adjustments'. Some do, some don't... and the definition of reasonable varies massively.

This week I was in a bar in Central London. When I'd first arrived I'd gone to the ladies and found them to be up a twisting flight of stairs on the first floor. The next time I needed the bathroom I decided I couldn't face another trip up the stairs and asked for the disabled toilet. The barman looked a little abashed and admitted "We don't have one... but I can't wait outside to make sure nobody comes in whilst you use the Gents" - lucky the Gents was on the ground floor!

Another visit to a Central London bar bought an even stranger experience. The toilets were, once again, located on the first floor. When I asked for the disabled toilet I was told to wait a moment and a member of the bar staff would show me where it was. It turned out to be un-signposted in a back of house corridor without a lock on the door!

These are not isolated incidents. Accessible toilet provision in Central London, I have found, is extremely hit and miss, and the annoying thing is that on occasion I find (as do many people with MS) that my bladder is affected and that I need to use bathroom more than most consider 'normal'.

DMDs

DMDs are Disease Modifying Drugs. There is no cure for MS, but there are drugs that you can take to help lessen the effects of relapses and even reduce the frequency of relapses.

These drugs are (in the UK) most commonly Avonex, Betaferon, Rebif and Copaxone. These are self-administered by injection. Neuro's preference is to start taking these as soon as you are eligible. The eligibility requires that you be diagnosed with MS, that you be able to walk independently (meeting certain criteria) and that you have had two clinically significant relapses in the last two years. There is also a newer treatment, Tysabri. This is administered in hospital by infusion. This has different criteria of eligibility and less people are eligible for this treatment.

I resisted DMDs as I have (had?) a terrible fear of needles. Routine blood tests usually involved me passing out and requiring rest and glasses of water before being fit to leave the phlebotomists chair. After several relapses requiring we walking with a stick I decided that it was time to overcome the needle-phobia and do something to try and ameliorate matters.

Winter 2006 I started taking Avonex. This had the advantage of only requiring me to inject myself once a week as the injection was intra-muscular. I took this for about a year until the relapse that landed me in bed. At this point my Neuro suggested switching to Betaferon which is stronger, and injected subcutaneously every other day.

Betaferon was a fairly disastrous experience for me. Not only did I have a another relapse only a few months after starting the course but I found it next to impossible to remember 'every other day'. One lasting (and irritating) symptom of MS for me has been a marked deterioration in my recall. The worst difficulty of Betaferon was the injection site reactions. These went beyond the little pink spots that I had on occasion experienced with Avonex. These involved craters appearing under the skin, and the skin changing colour from white to purple and the eventually a scab usually about an inch in diameter. This would last for several months before finally healing and leaving a very visible scar.

After trying heat, cold, creams and all sorts when no solution was found I was changed back to Avonex.

DMDs are a long term commitment. They don't cure any existing relapses, but they can lessen the severity of future relapses, and even the incidence.

This completes the 'history' of my MS. You now know how I got to be where I am today... taking Avonex once a week and walking with a stick.

Remission and Relapse

For sometime the pernicous disease and I worked on the very successful basis that I wouldn't bother it if it didn't bother me. Actually, I was pretty much in denial about the whole thing. The problem was that apart from occasional (mild) bouts of ON and sensory disturbances which were more irritating than disabling I didn't really feel sick.

After the initial relapse that confirmed diagnosis everything was pretty stable for a long (long) time... years in fact. It wasn't until 2006 that lots of things all began to 'go wrong' at the same time.

First there was the almost complete loss of hearing in my left ear. This went on for about six weeks. I did receive a referral to an ear clinic, but of course the whole process took so long that by the time I got there it was better!

The next problem was extreme weakness in my legs. This got so bad that it required the use of a stick to help me keep my balance and walk. This happened on and off for around six or eight months.

Worse than this was dizziness, so bad that I couldn't really stand up and my balance was completely shot. This got me sent to bed for six weeks and a double course of steriods. Several months later it happened again... and then again. Each time the steriods and physiotherapy seemed to speed up recovery.

Those are the significant relapses of the last two or three years. There have been other less disabling and more iritating symptons... loss of feeling in various extremeties, strange and agonising burning sensations. Sometimes they last a week then vanish, sometimes they last several weeks and things never quite get better.

The only thing you can ever be certain of with MS is that you can't be certain of anything!

Next - DMDs

More Neuro and the MS Nurse

Neurologists are quite amazing. They can tell a great deal about what is going on in your brain from other parts of your body!

Some of the tests that they perform see most peculiar... here's a small selection:

• walk along a 'line' putting your feet one in front of the other, heel to toe touching (I've seen US Cops on TV shows using this as a test for drunk drivers!)
• standing with your feet together with your eyes closed (the point being, I believe to see if you fall over!)
• sitting with your eyes closed and arms outstretched and touching your fingers to the tip of your nose
• sitting and running the heel of one foot down the leg from knee to foot on the other leg
• using a tuning fork and pressing the vibrating fork on your skull
• using pins (ouch) or feathers to test sensory perception
• running a sharp object down the sole of your foot
  
• getting you to resist pressure with arms and legs
• the good old rubber hammer and reflex test

Over the years I have both passed and failed many of these tests. It gets more depressing as time goes on and you a) know the expected response and b) fail.

The relapses and firm diagnosis also brought a new medical professional to the growing crowd of my experience. My MS Nurse.

MS Nurses in the UK are rather hit and miss, and seems to be one of those 'postcode lottery' type things. I am very lucky. My Nurse is completely amazing. Always available at the end of the phone, highly trained and extremely knowledgeable... I can't imagine how I'd have managed all these years without her. She is much easier to get an appointment to see than the Neuro and her office is right next door, so she can always pop in and see 'himself'.

Next - Remission and Relapse

The Neuro and the MRI

I hardly even remember my first visit to see the Neuro. The outcome of the visit was the appointment for an MRI. This I found a singularly unpleasant experience, as I am claustraphobic. To make matters worse to relax you they were piping music into the machine... Simply Red. I hate Simply Red! I got through the ordeal thanks to a prescription for Valium from my GP.

Of course some weeks (months?) later it was back to see the Neuro for the outcome of the MRI. I felt quite squeamish as he showed slices through my brain. Lesions... he told me pointing to some white patches, but not as many lesions as were expected for a final diagnosis. Probably MS.

So, off to live in 'limbo land' for a while. This was, of course, only the beginning of the tale though.

There next followed a new relapse. Not more ON but a most peculiar case of sensory disturbance. I completely lost the feeling in the fingers of my right hand. So much that I could hardly write... couldn't touch type... and had great difficulty in picking things up, doing up buttons, or holding things. This went on severely for several months... and even when eventually it subsided enough to continue everyday tasks I still (to the present day) do not have proper sensation in the end of my fingers... it feels like I'm wearing some very skin hugging gloves!

This strange (and irritating) sensation was accompanied by an even more irritating (literally) sympton. Amazing itching. Very specifically along the inside of my right arm from my wrist to my elbow. Constant and excessive to the point that scratching so much caused bleeding. A prescription for an epilepsy drug eventually cured this.

These relapses were enough to confirm the Neuro's tentative diagnosis. Yes, no doubt, MS.

Next - More Neuro and the MS Nurse

Visits to Eye Casualty

My first visit to Eye Casualty was a long day. Eye Casualty like any Casualty unit operates a triage system. If you aren't in danger of losing your sight or in any pain then you are not high priority. I sat around in a hot waiting room trying (and mostly failing) with my impaired vision to read a book. I was eventually given drops in my eyes to enlarge my pupils and told to go away and wait whilst they worked. I wandered round the nearby town looking for lunch and increasingly unable to see what I was doing!

The final examination was rather like an extended trip to the optician. There was a great deal of shining bright lights into my eyes, and using various tools to get a better look. There were also 'field vision tests' where you look straight ahead into a large machine and tiny pinpricks of light appear just about everywhere you can see. Each time you see a pin prick you press a button. I fairly spectacularly failed that test! Another test you do is like the colour blindness tests I remember from early childhood. You look at pages with coloured dots and have to find the numeral picked ou amongst the dots (in constrasting shades such as red and green). I spectacularly failed that test too! The culmination of the examination confirmed the doctor's tentative diagnosis. Optic Neuritis.

This was the first of three visits to eye casualty. The next time was about a year later, and had followed several minor bouts of ON which I hadn't sought any medical opinion on. This time I pointed out to the Consultant that this was about the third time in a year, and asked what could be causing it. Probably 'just one of those things' I was told; but sent for a chest xray (?!) to rule out some possible diagnosis that I can't even remember.

Several years passed without any real problem, until 2001 brought another severe bought of ON. I was referred back to the Eye Casualty by a new doctor (having moved house several times during the intervening years). With the expected diagnosis of ON I refused to accept that it was 'just one of those things'. I pointed out that having ON haf a dozen times in three years wasn't normal - and eventually I was given a referral to see a neurologist at my local hospital.

Next - The Neuro and the MRI

How it all began

I've been inspired by MS Week to move the MS part of my life to its own blog. Everyone has a unique experience of this disease and I find it helpful to share my experiences and to read those of others.

My MS began (as far as I can tell) back in 1998. I started to experience visual disturbances in one eye. I found it most peculiar as there was no pain - the experience was rather like on a sunny day when you walk out of bright sunshine into a dark room, and for a moment you can see nothing whilst your eyes adjust. At the same time I lost all perception of the colour red - and indeed any aspect of the spectrum involving red. This went on for some weeks before I decided that enough was enough and took myself off to the doctor.

My doctor confessed himself not to be an eye specialist, although his probable diagnosis was optic neuritis (ON), and wrote me a referral to the eye casualty unit at the nearby hospital. I asked him what might cause ON and he told me most likely a virus, or 'just one of those things', although a remote possibility was Multiple Sclerosis (MS). Like a lot of people I didn't know much about MS but immediately thought of disability and wheelchairs. When I asked about the MS the doctor told me it was most unlikely and that as the tests involved a lumbar puncture (which is very painful) I really shouldn't worry about it.

Next - Visits to Eye Casualty