My MS and Me

A solution?

2012-02-01T06:32:00.002Z

The last few months I've been struggling to sleep through the night. I had solved the problem of getting to sleep due to cramping muscles by taking Clonazepan which works a treat. Increasingly I was waking up during the night with stiff and painful muscles, which would prevail through the day.

Yesterday I spoke to my MS Nurse and she outlined several solutions - one of which was Gabapentine. I already a huge pack of that previously prescribed so we decided that was a good start. I took a tablet last night along with the Clonazepan.

This morning I woke up in exactly the same position I fell asleep in, usually a sure fire recipe for locked, stiff cramped muscles... not today though - still a bit of stiffness, but nowhere on the level of the usual pain. As the does gradually increase over the next few weeks I am optimistic that maybe this will help me get the good night's sleep I need.

More things I've learned from MS

2012-01-22T18:35:00.001Z

The trouser/knicker shuffle... lifting ball then heel of foot to put clothes on whilst standing up
Don't lean over standing up if you have balance issues, you may topple head first
If you're going down the stairs holding both rails and stumble let go, otherwise you'll hurt your shoulders
Leave extra time - little things take longer
Little things are legion... putting on jewellery, putting in contacts, doing your hair, doing your make up
If your memory is poor make lists... you don't want to leave the house without your trousers on!
Exercise - keep yourself in good shape, even if it is only stretching and moving your joints
If you're inclined to stiffness set reminders to get up during the day and change position

MS & Work

2011-12-10T17:00:00.000Z

The unpredictable nature of MS makes it a very hard disease to live with, and a very hard disease to work with. Many people struggle with the decision whether or not to tell their employers. I was diagnosed at my last job (where I didn't tell them) but I told my current employers at my job interview. My previous employers were never told as there was never a time when I had any visible symptoms and MS was in a benign phase. I'm glad that I told my current employers as it would have been a difficult conversation for me to have when I started having more severe relapses that needed mobility aids and time off work.

When I first started having mobility problems it was truly relapsing/remitting and I only occasionally needed to walk with a stick. When asked in passing at meetings I'd just tell the enquirer that I was having some trouble with my legs. The mobility problems progressed to a permanent stick and then to crutches; by now it didn't come up and colleagues and co-workers just accepted the aids as part of the person.

All my co-workers know that I have MS, some other colleagues from other companies do - if we have known each other long enough and shared enough long train journeys!

There is more to it than that though. Recently (and not for the first time) a bad relapse put me in bed for a prolonged period. This meant that my job which was just reaching a critical stage had to be passed to somebody else, and for continuity of service stayed with them once I was back at work.

My job as a QS is largely office based; however, when a job goes on site so does the QS (at least once a month often fortnightly). This is where the problem arises... a person on crutches isn't really compatible with a building site - how does on climb scaffolding or even worse ladders?

Luckily my employers are accommodating and understanding. They accept that there are things that I can do and things that I can't do. The problem is that the things that I can't do change. Rather like the frog in the well for me recovering from a relapse is one step forwards and two steps back; I never quite get back to where I started.

Now even going to a meeting a back sets back my day. Walking more than about 20 yards is exhausting. Yes, I could take a taxi - but traffic in London would mean that even more time was taken out of my already stretched day.

Then there are the problems that can't been seen, the 'invisible' symptoms. The dreaded 'cognitive difficulties'. I have extremely poor memory; I deal with this using calendars and note-taking applications that synchronise between my work computer, my phone and my home computer. Worse is the 'brain fog' the moment when you can't find a word, whether it is in the middle of writing a report (annoying and delaying) or a conversation or meeting (embarrassing). There is the difficulty in maintaining concentration. At home this is irritating (especially for the Better-half) but is also a bit of a long running joke. At work it can be insurmountable and it just means that some days are not as productive as they could and should be.

Then there are the problems that people don't like to talk about. Difficulties with bladder or bowels. I have all sorts of bladder problems; exacerbated at work by the fact that the ladies toilets are one floor down. I've had different problems over the years, the current is extremely annoying - I'll not think about going to the toilet all day; but as soon as I do I'll realise I need to, desperately. Wait for the lift or wobble down the stairs - it is a toilet dash. Not too bad in your own office, but worse if you're at a meeting and don't know where the facilities are or out on site where there are only one set of facilities!

I'm lucky though. Everything that MS throws at me I manage to deal with or live with. It means that I can keep working in a job that I enjoy (most days).

Things I have learned from MS

2011-12-10T12:48:00.001Z

If you have dexterity issues don't buy blouses or trousers with buttons
If you have balance issues sit down to put on underwear, trousers, socks and shoes
If your right hand lacks strength, hold the glass of red wine (cup of coffee, etc.) in your left hand
Never let go of your crutches on an escalator
If it is there, always take the lift
Always know where the toilets are
Embrace technology and social media; if you are stuck in bed it will keep you sane
Listen to your body, when it tells you enough then it is time to stop
When help is offered, accept gracefully and with thanks

Getting back to normal

2011-10-14T18:04:00.000+01:00

So, this week I got back to work (at last). My Nurse told me not to... and I never bothered to go and ask the Doctor what he thought; I was going mad stuck in bed.

I was starting gradually anyway... half a day on Monday and half a day on Wednesday. It isn't like I really had to move too much. Walk to car, ride to work, walk to office, sit in chair (get brought coffee), walk to car, ride home, walk to house.

I think it was more tiring working at home on Tuesday and Thursday to be honest... I tried working in bed with the laptop but it didn't work with all the bits of paper so I had to get up and sit at my desk which, using a laptop, isn't ergonomically quite right.

But here we are and it's Friday; and I'm not a total wreck. Tired, yes. Glad the week is over, yes. Feeling better than I have done in a month, yes. I think having something to occupy my mind and feeling useful again really helps in the whole 'feeling better' bit.

The steroids are finished at last too. That means that my insides and sleep patterns will hopefully be returning to normal any day now.

I can't say that I'm 100% recovered. I still can't walk any distance... the Better-half had to push me in the wheelchair to the Doctor's for my flu jab this afternoon. I'm keeping up with all the stretching exercises though so hopefully that will get some muscle-tone back and if nothing else make my arms strong enough to push myself in the wheelchair a bit.

It's been a difficult four weeks but hopefully things are on the up now.

Baby steps

2011-10-07T11:28:00.001+01:00

So this is the end of week four in bed. Honestly, I'm fed-up. I feel much better than I did (although not better enough to be up and around all day). Better enough to feel bored. I guess that is progress.

I wanted to go back to work next week but my Nurse said she didn't think that was a good idea. As a compromise I'm going in Monday morning to collect some work that I can do from home.

Have to remember... baby steps. I've been here before and too much too soon sets me back... patience and taking it slow is the key.

I've been doing my exercises (which mostly involve sitting and stretching muscle groups) and making an effort to get up and about at least once during the day.

What remains to be seen is, like the frog in the well, how far I'll climb back up after this relapse. It always seems to be one step up and two steps back so that you never reach where you were before.

As long as I can get back to middle distance mobility on crutches I'll be happy... I don't mind the wheelchair for days out and long journeys... but I'm not quite ready to welcome it as a permanent part of my life yet!

Tell MS Friday (3)

2011-10-07T11:20:00.001+01:00

I'd like to tell MS... sometimes I hate you. Because I never know what the day is going to bring. Will it be a good day... no new symptoms; a bad day... strange new symptoms - or just another day where nothing gets worse but nothing gets better either.

Tell MS Friday (2)

2011-09-30T15:11:00.002+01:00

I'd like to tell MS... you are a learning experience. I have learnt to understand my body. I have learnt to listen to it, and understand and respond to it's needs. I've learnt to rest when rest is needed.

Tell MS Friday (1)

2011-09-23T07:06:00.002+01:00

I'd like to tell MS... thanks. Having a relapse has made me appreciate how much love and support I get from my family and friends. The Better-Half, Mutti, Nearly-Mother-in-Law, Gran and Kitten-cat (to name a few). Couldn't do it without you!

Staying positive

2011-09-22T18:37:00.001+01:00

Half-way into the first week of the second course of steroids... it's a bit like a spell... 12 for 7 days, 6 for 7 days, 3 for 7 days, finish.

Happiness is that the rampant insomnia has dialled down to a more manageable level. Happiness is that the stomach upset between the two courses has gone. Happiness is that the Omazeprole taken right means no more sore throat, chest and heartburn. Happiness is that the Gabapentine has done some good for the sensory abnormalities in my hands and feet.

Sadness is that I'm still in bed, I still have dizziness and I still can't walk properly... but one day at a time, eh.

Down in the Dumps

2011-09-19T15:18:00.001+01:00

I am feeling like Tennyson's 'Lady of Shalott' today "I am half sick of shadows," said The Lady of Shalott. Although it is amazing how smelly and messy you can get just lying in bed - I am distinctly less Titian and flowing than Tennyson's heroine is generally portrayed!

Since my hospital visit last Wednesday I haven't been out of the house - neither have I had the energy or inclination. Apart from bathroom trips; occasional visits downstairs for food, TV and cat-time - I actually haven't much left the bed.

The five day course of Methylprednisolone steroids have run their course (thank goodness) - so the constant low-grade headache and sore-throat are gone too. I had forgotten that the instant reaction to the end of the course is a monster upset stomach - so that was a nice surprise today. Nice neuropathic burning pain in my hands and lower arms has joined the roster of complaint - lucky I still had some Gabapentin left and the Nurse says it is OK to take it!

Now onto the endless (seemingly) three week tapering course of Prednisolone. Something better start working soon. Right now I still can't walk (lurching and staggering rules!) - this is taking forever to type (but is easier than the row I had with Microsoft's Ease of Access Speech Recognition). The foregoing means I can't go to work - couldn't be worse timing as a colleague has just left and we are short staffed (again)! Add to that the mind numbing boredom - fed up with movies, too tired for Xbox, fed up with reading - used up the internet. I think my brain may begin to stagnate.

Twitter just depresses me as it reminds me that the world is busy doing things whilst I have a patch of sky with a tree to look at. Yes, I am feeling sorry for myself today.

I am lucky that I have my family; the Better-Half nurses me and waits on me (even though he's got a cold); my Mum calls me every day; and Kitten-cat is doing his best to be my constant companion (even if he is mostly asleep!).

As Buffy sang in the famous musical episode 'Once More with Feeling'... "Where do we go from here?".

Relapse (again)

2011-09-15T08:39:00.001+01:00

Last week I saw my Neuro for our annual routine appointment. His final words were "See you in a year, unless, God forbid you have a relapse". Way to tempt fate.

On Sunday a relapse began. I felt like a puppet whose strings had been cut. Every tiny thing took too much energy (it took forever to eat dinner as lifting cutlery to my mouth was exhausting). The Better-half wondered if it was just a reaction to my busy Friday... but funny how you get to know your body when you have MS... and I could tell it was more than that.

So, on Monday I rang my MS Nurse who requested I come and see her (and the Neuro) on Wednesday. You have to get used to a lot of things that once would have seemed undignified when you have a long term disease, as taking a urine sample with you to the hospital is standard. No toilet trips after 8pm the night before... two pints of water and two cups of tea and my bladder was still extremely (and predictably) un-cooperative.

Unsurprisingly the suggested course of action was steroids. "Do you tolerate steroids?" my Neuro asked, "Yes", I replied, "They just don't usually have any effect". On this basis he gave me a prescription for the two courses mehtlyprednisolone - oh I love your vile blue taste - for five days and then tapering course of prednisolone. I shall rattle again. Already worrying that I'll get a chest infection (which has happened before) as it is sore when I breathe too deeply. Fix one problem, get another.

The Better-half, the medical professionals and I had another conversation about Tysabri - both MS Nurse and Neuro being concerned that unless more aggressive therapies were considered my disability would progress. They were basing this on my visiting in my wheelchair yesterday, but I pointed out this was just because my legs had given out and I was too fatigued to walk to the hospital and it was my intention to not make this a permanent arrangement. They gave us leaflets to take away and the Better-half and I will have some risk/benefit analysis to do over the next weeks before I see the Nurse again.

Sent the Better-half off to the pharmacy whilst I chatted to the Neuro's Tysabri poster-girl. Have to say - she looks good on it. Three and a half years and not a single relapse. She kindly pushed me down to the pharmacy where the Better-half smashed by own waiting record (70 minutes) with a massive 90 minutes.

And so home. Lunch, steroids and peach juice (which is the only thing which begins to combat the taste of the tablets) and then fell to sleep for several hours from the exertion of being pushed around in the chair (yes that is how bad this relapse is).

Had to have a conversation with my boss in the evening about the current situation. I had emailed him every day to let him know what was going on - he was hoping bed rest would have me back on my feet. Had to go into worse case scenarios (steroids and the time they take to work)... bad time to be sick - work is busy; I am hoping maybe when the steroids start to kick in I can at least work from home. Right now that just can't happen as I'm most comfortable lying down trying to use the laptop - unbelievably slow as I keep stopping for rests. This post has taken half an hour!

Not even the MS this time...

2011-07-04T19:02:00.001+01:00

Yesterday I had a pain in my lower abdomen. I've had it before and been intensively investigated including an intrusive ultrasound - not like the sort you have when you're pregnant. They never found what the problem was because tests take so long to organise it had always gone away again by the time the test came round.

Today the pain was still there - and much sharper than normal. The thing that worried me was that it was located just about where NHS Direct told me my appendix was. My GP surgery (as normal) couldn't give me an appointment until 12pm (how is that possible when their phone lines were down?!). Off I went to A&E.

I am a regular visitor to the Queen Elizabeth Hospital as an outpatient but I'd never been to A&E before. A long (long) walk down the side - almost back to Cemetery Lane where I'd come from!

It seemed quiet, not at all as jammed as I expected. I gave my details at the desk... solved the mystery of the wheelchair delivery people not being able to contact me (the hospital had a very old mobile number)... and took a seat. I had my Kindle as whenever I've visited Eye Casualty Units I've been there for hours. Not very long later the PA system asked me to go to the mobile unit outside the entrance.

Delightful bright, airy (and above all clean smelling) portakabins. Now I did settle down and waited quite a while. I eventually saw the doctor with his amazing gadgets (he pointed a laser at my head for my temperature and took my blood pressure with a tiny little finger cap). Prodded and poked. Not appendicitis, but if it got worse or I developed a fever (etc) then come back. Strange thing - as I was leaving I apologised for wasting his time (was feeling a bit guilty for my over-reaction) but said I hadn't been able to get an appointment to see my doctor. You did, he told me, just not at the surgery. I thought I recognised him!! I congratulated him on his excellent memory, he told me it was the unusual name.

I kept the Doctor's appointment as I was now wondering if it was some sort of infection. The GP did some more poking and prodding and agreed that it wasn't appendicitis. Then he asked for a urine sample. Whenever this happens my bladder goes on strike - so he told me to bring one back later.

Two cans of coke, a pint of fruit juice and three pints of water later I eventually did. No infection I was told. Take paracetamol if it helps and rest. So I am.

Wheelchair debut

2011-07-03T13:36:00.000+01:00

The wheelchair and I had our first outing yesterday. Mum and I went to Bluewater. Apart from the occasional inconvenience of being effectively the height of a small child I managed well. Mum gave me some pushes when we were in the malls and I pushed myself in the shops. I'm particularly proud of my turns!

The best thing though - usually a shopping trip like that would have left me wrecked... but today I still have spoons!

Disapointment

2011-06-27T20:25:00.000+01:00

It was my regularly scheduled appointment with the MS Nurse today. I had high expectations though. Last month I'd gone for a specific blood test and an MRI.

The hope was to start taking Tysabri which is supposed to be about 40% more effective than the Interferons at preventing and alleviating relapses. My reservation at had always been the risk that goes with Tysabri of PML (a brain disease) - although recent wisdom is that there is only a 20% chance it can kill you, if contracted, it could still leave you more disabled than when you started. The positive news that had started the round of tests is that recent research had determined that if you had not been exposed to the JC Virus in earlier life you can take Tysabri with no risk. So I had the blood test (and an MRI).

The bad news was that my test results were positive for the JC Virus; which meant that I didn't want to to continue with the Tysabri route. I had all but convinced myself that the test would come back negative - so I shed a little tear on my way home. There was further bad news in that the MRI showed 'a few' more lesions than the last I had done back in 2002. Happily my Nurse's computer doesn't have the software to show the scans so I wasn't forced to sit and look at slices of my brain as my Neuro made me do last time, gross!

All in all a bit depressing. For an awful long time my MS was mostly 'benign' (yes, I know, I was lucky!) and the relapses I had weren't too troublesome - a little numbness here and there or an attack of Optic Neuritis. It was only the two really bad ones that lasted about six weeks with the vertigo and total lack of strength in my legs that finally got me through denial and convinced me that I really did have MS; up until that point I still though it was one big mistake!

The problem is now that every relapse comes and goes - but like the frog in the well I go two steps up and one step back; nothing ever quite gets better.

There is another hope in Fingolimod - it has been approved in Europe and is currently going through the NICE process. The problem for the drug, it would seem, is that is costs almost twice as much as I remember being told that the injections cost. More effective than the injections although less effective than the infusion it does provide hope.

Wheel-chair arrives

2011-06-05T20:09:00.000+01:00

The wheel-chair arrived on Friday. So far I've sat in it in the living room and that is about it as I was under house arrest this weekend getting some rest.

It is alarmingly large and doesn't fold up nearly as much as I'd hoped. I'm somewhat doubtful about my original plan of keeping it in the boot of the car.

It will be a good thing though. Every time I'm going somewhere that needs a lot of walking input I don't have to think about it any more.

In good news, the Optic Neuritis seems to have gradually got better and without me realising it has now gone. Standard six weeks with attempted (failed) steroid intervention.

My prescription ran out this week. My doctor's surgery decided (again) to ignore the stamp addressed envelope I enclosed with the repeat request. This meant that the muscle relaxant tablets that help me sleep through my legs at night ran out and I had a few bad nights sleep. The worst being the one where I got about three hours... and still had to get up and go to work in the morning. The prescription has now been filled and all is well at bed time again!

Steroids nearly run their course

2011-05-08T22:44:00.000+01:00

First I had the horrible 5 day course of the blue steroids... the ones that taste vile. That made no difference. Then I had the three week tapering course (which will finish on Wednesday). The little red pills... twelve for seven days, six for seven days and three for seven days. An impossibly large amount of tablets for the pharmacy to count out!

Nothing is fixed. I still have ON in my right eye. It is still annoying as it makes it hard to use the computer (amongst other things) and gets worse when I do anything or move my eye too far in any direction.

These are two pictures which attempt to illustrate the effect of ON on my vision. Left is normal and right is disturbed.

My feet still don't have any feeling in most of them - and my toe muscles have taken a permanent vacation. I just bought some 'spa' type-thing made out of soft rubber - like a fancy thing that you put between your toes when you paint your nails - but it goes all the way round so straightens the toes a bit. Hopefully it might make some improvement.

The bad toes and balance means that I keep tripping over myself. I don't notice most of it as I haven't got much feeling in my legs. I have to be like a leper and keep checking for cuts and grazes! That one really hurts as it is a bruise as well as a cut. Ouch. You can see all the scabs and scars - it is always my right foot that trips up my left foot!

The last complaint is my right hand. It has got better since it was at its worst - but it isn't cured. Again the muscles just aren't working properly. Of course, I'm right handed... so it makes it hard to write and also (as a touch typist) hard to type. It makes it hard to do a dozen other things too - buttons, earrings, tying back my hair... no manual dexterity is very irritating! Not only no strength, but not much feeling - I feel like I'm wearing a glove all the time!

Right. Complaining over. On the plus side I've been keeping up my 'do anywhere' exercises and I think it has been helping my legs. On the further plus side - the wheelchair (for long journeys and things) should also be arriving soon.

Here we go again

2011-04-21T14:00:00.000+01:00

The five day course of steroids has made no difference to my ON. Off we go on the tapering course then... 147 tablets (and the rest) over the next three weeks. Fingers crossed!

Limitations

2011-04-04T19:35:00.000+01:00

It seems that my limitations are more limited than I previously thought. I had a busy weekend... on Friday I was at St Paul's Cathedral; on Saturday I had to take the car to get its MOT (which I had forgotten about and the garage rang to remind me); on Sunday it was off to see my Mum for Mother's Day (lucky my brother was driving). No rest at all really.

And last night and today I suffered. I woke at 3am feverish... drenched in sweat but freezing cold. I asked Rich to get me a hot water bottle, at which moment he pointed out that I probably wasn't fit for work. As my hands were also in agonising pain I couldn't see how I would hold the crutches and was forced to agree with him. I went back to sleep with my hot water bottle... and didn't wake again until nearly lunchtime. I dozed for most of the rest of the day until about 3 or 4 when I realised that I felt much better. I was no longer feverish and my hands were a bit better (although still rather claw like).

The Law of Spoons must be observed. Out of the three days that form my weekend if two of them are to be filled with activity one of them must be filled with sleep and bed-rest... otherwise disaster and flare-ups of old symptoms will follow. As the meercats would say "Simples".

A new one

2011-03-22T21:16:00.000Z

This time the eye problem isn't Optic Neuritis but rather Retro-bulbaric Neuritis which is a very specific form. That's the science bit... I was lost there. It means that instead of the usual visual disturbance with no pain I have a lot of pain with no visual disturbance.

It took an afternoon at A&E at Moorfields Eye Hospital to establish this. I'm not exaggerating. I was there for over four hours!

I'm off to bed now to take a cocktail of drugs which I suspect will knock me out until morning. I'm hoping they'll stop me waking up in pain when I move my eye in my sleep at any rate.

ON and other things

2011-03-19T14:36:00.000Z

My suspicions a few weeks ago that I was getting another dose of ON seem to have been bang on. This time I don't have so much visual disturbance (which is useful) but I have terrible pain behind my right eye. Most of the time it is actually only a dull ache - unless of course I move my eye at all. You wouldn't believe how much you move your eyes in a day.

There isn't much to be done I suppose. It is probably too soon since the last dose of steroids to take another course - just have to hope that it is a short attack.

In addition the car broke down yesterday and I had to schlep around Charlton and the Greenwich Peninsula. No spoons left today, so have taken to my bed. Really disappointing as I had big plans for this weekend.

Not much improvement

2011-02-13T20:15:00.000Z

So I took the week long course of steroids, complete with peach juice antidote. I can't say that I have noticed much improvement in terms of either fatigue or muscle control in my legs or balance.

The whole situation was messed up a bit though; I finished the course of steroids on a Wednesday. On the Thursday I got food poisoning, followed by a stomach bug which laid me out for the whole weekend. The only positive was that I did lose half a stone through the whole sorry affair.

The Access to Work has been a blessing. I have no idea how I'd have managed without it. I've had to go to a couple of meeting during the day in the last few weeks which means taking the tube and that has been pretty exhausting.

It is annoying that Amantadine stopped working for me and that Modafinil has such a detrimental effect on my sleep patterns that there is no point taking it. I am having a massive problem finding enough energy to get through the day at the moment... lucky, I suppose, that my job is keeping me at my desk pretty much all the time now and I don't have to go out much for site visits or meetings.

Here's my current paradox. I cannot feel my feet at all, certainly not the soles of my feet. However, when I got out of my nice hot bath they were itching to the extent that I had to smother them in E45 anti-itch cream. How can they itch if I can't feel them?!

New reality

2011-01-28T18:53:00.000Z

Last weekend I got a bit carried away with myself. I forgot the rule of spoons. The taxi journeys to and from work have revolutionised my life. I have so much more focus and energy.

So... on Friday my Mum came to visit and we went out to lunch and went shopping and I introduced her to the kittens. That was quite a lot of spoons used up.

On Saturday I made my annual pilgrimage to the Valley. Mistake 1) as I was sitting in regular seats I only took one crutch as I was worried about room and also about standing around drinking beer before the game with no hands. I realised halfway down to the ground that this was going to be tough. That was going downhill. It was confirmed at the ground that my legs were pretty much giving up. I sat through the whole game only standing to applaud the new manager and the goals. Going home was horrendous. I realised about 10 feet from the ground I really couldn't make it. Rich pretty much had to drag me home. It took forever and a day - certainly a lot longer than it takes him on his own!

I spoke to my Nurse in the week and agreed that even though I'd vetoed the idea at our appointment the previous week maybe a course of steroids would be a good idea after all. So, here's me and another course of Medrone (thank goodness peach juice, the only cure for the vile taste of the vile tablets came in the shopping today). During the same conversation my Nurse suggested that a wheelchair might be in order... she started the sentence with "I know you won't like the idea..." - but after my experiences of the weekend I took no convincing. So wheels have been put in motion as it were (pun not intended) and in a few months I should have my own wheels.

Part of me hates the idea. I've always resisted anything that takes away my independence or gives obvious sign of my disability. This has always been a mistake. I should have agreed to nearly everything from DMDs to Access for Work a long time before I did. So, this time I am putting my pride in my pocket and gratefully accepting the help offered.

Routine Nurse appointment

2011-01-17T19:59:00.007Z

Today was my six monthly check up with the MS Nurse. I had to walk through a monsoon to get to the hospital after four buses left without me. I remarked that Area E was like Piccadilly Circus... it had been like the Marie Celeste earlier I was told. Apparently the weather must have kept a lot of people home first thing.

My appointment was on time (unusual) and I managed to defer the blood tests until Friday... at which point I can go first thing and hopefully avoid the queues. We discussed my current symptoms and probable relapse and the Nurse agreed with me that it was probably down to the stress around my Dad dying and the terrible cold over Christmas.

I declined a course of steroids on the condition that I go back to her in four weeks if I see no improvement.

Relapse Indicator

2011-01-08T18:02:00.000Z

I have two rules about baths - first they should be deep and second they should be hot. As hot as you can manage - hot enough to turn your skin scarlet.

This also is an invaluable relapse indicator, as I am one of those people whose symptoms are exacerbated by the heat. The stressful time before Christmas when my Dad died coupled with the dreadful cold I had over Christmas were prime relapse triggers. I have been suspecting for some time as my feet and hands have got more numb (they were almost better too). Unfortunate by product of numb feet more falling over and more bruises... hence desire for long hot arnica filled bath. Sadly after five minutes it became apparent I also have a dose of ON in my left eye as the vision had dulled to the extent that I could hardly see out of it. Ten minutes in the cold of the pink room and the landing everything has calmed a little. The itching on hands and feet has stopped (how can they itch when they are numb?) and the eye is back to only dimming the colour red. Happily I am seeing my Nurse a week Monday so we can discuss it all then.

Talking of baths, I also have two preferences (they cannot be classed as rules) in respect of bathing - first baths should be lengthy (my preference is for wrinkly skin and the water turning cold) and second they should be cat free. Tinker's fascination with water makes this hard, if he's locked out he'll scratch at the door and pull up the carpet and if he isn't locked out he'll let himself in and try to join you in the bath. Length is curtailed by the unpleasant relapsing effect on my symptoms.

I'm a Spoonie

2011-01-08T08:30:00.001Z

Jodi shared this on her blog ages ago and I starred it in Google Reader to pass on and then forgot about it (as I'm inclined to do unless I write myself a note!). It explains what it is like to live with a chronic and debilitating disease, but most importantly also one that is often invisible.

The Spoon Theory written by Christine Miserandino

Legs and eyes

2010-11-20T16:25:00.000Z

I've not had much time to write recently. Work has been busy (of course) and my Dad has been poorly in hospital. This probably hasn't helped my physical situation which isn't terribly good right now.

About six weeks ago I noticed that every evening I was getting a horrible tense feeling in the muscles in the backs of my legs around my knees. The only relief to be got was by constantly stretching and moving my legs. This drove me mad and Rich mad. So I saw the doctor who wrote me a prescription for Diazepam. Wikipedia informs me that this is actually Valium - I guess that explains why the most notable effect was sending me to sleep.

My Nurse recommended that the next stop should be Clonazepam (related, the clue the doctor told me being in the end of the name). As I was rushing off to see my Dad in hospital yesterday I never got a chance to pick up the prescription so I guess it will be next week before we find out if it is any help.

Just to put a cherry on the cake (as it were) I noticed yesterday when I was rushing about a distinct lack of the colour red... first symptom I get of an attack of Optic Neuritis. Excellent. Nothing to do but wait that out or ask for another course of steroids... which it is quite possible I have had enough of this year already!

An award

2010-10-03T10:03:00.002+01:00

Herrad recently gave me this award, thank you! In turn I am passing this award to Jodi.

Keeping a diary

2010-09-28T13:44:00.000+01:00

When I saw my Occupational Therapist last week she gave me a 'fatigue diary' to keep. It is split into lines for each hour of the day and you have to keep a note of what you were doing, how much fatigue you experienced (on a scale of 1 to 10) and any other notes (what you ate, how much sleep you got the night before, etc.).

I have found this quite easy to keep up with but, as she promised, it is a bit like Groundhog Day - there hasn't been much excitement in my life the last week!

Annual Neuro

2010-09-18T18:05:00.000+01:00

September means that it is time for my annual check up with the neurologist. The visits always follow the same format - he runs through all the things that I might be having trouble with (speech, swallowing, bladder, bowels)... we discuss any relapses (and associated courses of steroids in the last twelve months)... I complain about the things that are really bothering me - memory difficulties, numb hand, modafinil keeping me awake.

He suggested to me that on the topic of waking early in the morning that this could have other causes than the drugs... depression for example. I pointed out that I had suffered from depression, knew what it was like and categorically could confirm that wasn't currently one of my problems.

He also commented on my crutches (rather than the one stick) I told him it helped me balance better and meant I could get around faster - he did agree with this when I was leaving!

We then had the usual conversation where he tries to get me to take Tysabri and I refuse. I know heaps of people take it and it sometimes works for them but the one in however many thousand risk of the brain disease is too much for me to worry about. He then went on to suggest a different solution - a chemo drug I think it was which has a one in something hundred risk of causing leukaemia or heart disease. I did comment that this risks were even worse and that I'd stick with my Avonex for now.

I was a bit depressed at the end to hear that my EDSS score has gone up to 6.5 which is a half a point increase since this time last year.

Postive action

2010-09-01T17:24:00.000+01:00

Today I had the much awaited visit from the occupational therapist. We spent about an hour going over just about everything... from my MS diagnosis to symptoms and lifestyle. It was a very positive meeting and she has lots of suggestions to help - the one I am most keen on is managing fatigue without taking drugs. We also discussed starting some sort of exercise regimen and she gave me some useful weblinks to look at.

I am going to look into 'Access to Work' to see what can be done to make the (many) hours I spend at work easier.

All in all I was left feeling that life can (will) be much more manageable than it is now.

More new meds

2010-08-01T18:27:00.000+01:00

It has been a while since I have found the time (or energy) to post. Work was crazy for a while and and 12 hour days weren't unusual. This meant when I wasn't at work I was probably asleep.

Most symptoms have been relatively stable for a while. My numb right hand has finally begun to improve ever so slightly (I can hold a pen better, although irritatingly, still can't type) and my feet and legs are also getting most of the feeling back. My balance is no better (no worse either) and I'm still using two crutches. Last weekend I was out in the garden without a stick (how much can falling over hurt?) when I fell of the path and twisted my ankle. Ouch, how that hurt. It is still sore a week later.

The hot weather has been hideous. It has very badly exacerbated my fatigue which was already pretty hard to cope with. Fortunately I finally got the prescription for the new fatigue drugs... I started with Modafinil yesterday. So far, so good... although it is early days yet. Had a bit of a headache yesterday evening and killer trapped wind... but both are better than the leaden heaviness of the dreaded fatigue!

Remember there are limits...

2010-05-31T18:58:00.002+01:00

I often say (as a lot of people with long term health problems do) that I won't let it dictate how I live my life. This was reflected at the weekend when I met up with a school friend who I hadn't seen in the best part of a decade.

In honour of our meeting in Central London I decided to abandon the crutches in favour of one stick (seriously - have you ever tried to marshal crutches in crowded places?!). I also decided to take some 'tourist time' whilst waiting to meet my friend.

Soho, Covent Garden, the National Gallery and Whitehall. By the end of the day I could barely stand. The muscles in my feet were seized up and my legs were pretty wobbly. Finally returning to North Greenwich I fell into a black cab to complete my journey home.

The limits now seem not to be 'listen to your body' as I had no warning signs that I was over-doing it. The limit now is accept MS and adjust. Maybe it won't dictate how I live my life... but it will demand some concessions.

The bad and the good...

2010-05-08T00:11:00.001+01:00

Let's face it - having MS sucks. I remember once, years ago when I was not long diagnosed, the MS Society sponsored the horoscopes in the paper one day. Every star sign had something along the lines of "today will be unpredictable".

That is the bottom line with MS - you don't know what is going to happen next... what fresh way your body is going to betray you.

This week I've been back in bed. I woke Tuesday with horrible spasms of pain in my legs. This lasted into Wednesday. I thought things were getting better so I decided to get up. Mistake. Pain came back.

At the same time my numb right hand, which I thought was getting better, is pretty much completely numb and useless again.

Have been resting and sleeping trying to get better... I really need to get back to work.

Tonight, being Friday, is injection night, time for my weekly beta-interferon dose. I've dosed up on paracetmol (it is a cruel twist of fate that I am allergic to the far more effective aspirin and ibuprofen). I'm hoping that the side effects are helping (if not causing) the new crop of symptoms; extreme dizziness, which I can manage by lying down; and bizzare sensory disturbances, I feel like bugs are crawling on me. I have gone as far as to try and brush them off... it is freaking me out as I have a bit of a bug phobia!

That all is the 'bad' from the title. The good (yep, you can just about find a positive in MS) is the amazing people you meet online through MS blogs. Catching up a weeks worth of reading I realised that there are some truly inspiring people out there.

I have no idea how to post links in this post using my iPhone. Tomorrow I'll post from my laptop and include them. Reading about other people's experiences makes you feel less alone: thanks to Herrad, Carole, Amelia, Jodi and Steve (amongst others) for sharing your lives.

- Posted using BlogPress from my iPhone

Rude awakening

2010-05-04T05:13:00.000+01:00

Woke up about an hour ago with horrible pains in the muscles of my legs, from the knees to the ankles. Not constant pain, just really severe shooting pain, the sort that if you were standing up would floor you.

This is a new (and unwelcome) development, which I assume (as I do when any new health problem appears) is being caused by my MS.

My steroid course finished a last week. Can't say there's any feeling back in my right hand, though it is a bit stronger... I think that is down to all the exercising with stress balls!

- Posted using BlogPress from my iPhone

Another course of steriods

2010-04-10T15:00:00.000+01:00

The latest relapse has shown no improvement. I'd say, if anything, things have got worse. My right hand is barely functional now and even worse I keep dropping things (so far today my lunch and a pot from the fridge which then split all over the floor).

So, back to the steroids... it is the really aggressive course this time. Nearly £30 at the chemist to get all the required medication.

Twelve tablets for seven days, followed by six tablets for seven days and finishing with three tablets for seven days.

I addition the yellow tablet (which gets taken twice a day) to protect my stomach and the calcium tablet (also twice a day) which given the size is fortunately chewable. There are also my two regular tablets to add to the morning batch and a sleeping tablet at night as steroids rob me of sleep.

Phew! Hopefully the steroids will work and things will get back to normal soon - otherwise I may have to learn to become left handed!

Finally reached stage five?

2010-04-03T16:02:00.000+01:00

I read somewhere once that when you discover you have a debilitating or long term illness you go through the same process as when grieving. The famous five stages of grief (outlined by Elisabeth Kubler-Ross) denial, anger, bargaining, depression, acceptance.

For the longest time I was stuck at the first stage... denial. Because my MS was mostly remission and very little relapse for the first few years after diagnosis I pretty much ignored it and pretended to myself that it was all a big mistake.

Stages two and three happened pretty much one after the other when in 2007 I suffered a pretty major relapse which ended up with me being stuck in bed for around six weeks. At first I was angry because I was missing work and I was extremely bored; then I was making deals with my capricious health... you know the sort of thing; "I'll ease off the hours if I can just be well enough to go back to work".

Depression hit around a year ago when it hit me how long I'd been continuously using the stick and how nothing seemed to have got much better in the longest time and therefore probably wasn't ever going to.

Now, finally, after so many years I seem to have reached acceptance. I know this because I sent of my application for a blue badge today.

Look no hand(s)....

2010-04-02T17:02:00.000+01:00

Two weeks on from the steroids and nothing has gotten any better. I would, in fact, go as far as to say things have got worse. The loss of sensation in my right hand, which had only been affecting the little to middle fingers badly has now worked all the way across to my index finger and down my palm.

The problem with this is really only inconvenience. I can't write properly because I can't feel the pen; I can't type properly because I'm a touch typist and I keep missing letters that require the left hand (especially 'o' and 'p')... I also can't do up buttons or jewellery... I can't use a mouse properly with the computer... it is all very frustrating.

I spoke to my nurse on Friday who is going to send me the protocols for the three week steroid course to give to my doctor. Hopefully this might have a positive effect...

My feet have also shown no improvement, which means that I'm still using the crutches to make sure that I don't fall over. Again the biggest problem with this is getting things done... try going to the supermarket with no hands!!!

No improvement

2010-03-19T14:08:00.000Z

The course of steroids is happily finished. I got an extra night of not being able to sleep just to round things out - didn't sleep until 3am on Thursday morning and then predicitably felt utterly rubbish when I did eventually wake up. Lucky I had a day off yesterday!

I have noticed no improvement with the numbness in hands and feet. It is really beginning to be inconvenient now as the right hand side is much worse affected than the left... and of course I'm right handed. Can't type properly, can't write properly, can't do my hair and make up properly... the frustration!!!

In addition my circulation is very poor, this means that my feet (especially the useless right foot) are constantly freezing.

Award

2010-03-14T19:33:00.002Z

Thanks to Herrad who sent me this award.

Steroids - days 2 and 3

2010-03-14T19:30:00.001Z

I'm now in the middle of my five day curse (I mean course) of steroids. The taste of the damn things is still vile and stays with me pretty much all day (well at least to dinner time). In addition a rather unpleasant side effect is that breathing has become as if on a cold (bitter) winter's day... every time I take a breath in my trachea is sore. Hopefully this time I won't actually get a chest infection, which is what happened last time I took steroids.

I haven't noticed any improvement yet... but I guess that it is early days. Not being able to type and write properly is driving me up the wall... as is the lack of manual dexterity... I managed to peel my knuckles instead of the potatoes the other night!

Still, taking it easy of the weekend has been great. Apart from a bit of pottering in the garden (where it doesn't matter if you fall over) I've not been anywhere or done anything. Not looking forward to the journey to work with the crutches tomorrow.

The truce is over

2010-03-13T10:29:00.000Z

MS and I have a deal - I don't bother it and it doesn't bother me (although I'm not sure that sticking my thigh with an inch long needle once a week counts as 'not bothering it'!). That's the theory anyway. The latest period of remission had been lasting for a while - and I was feeling quietly optimistic for 2010. Fool!

The first sign that something was wrong was in the middle of February when I kept getting these waves of dizziness. Not exactly dizziness - it is hard to describe the odd feeling that flashed through my head about two dozen times a day. Nothing else happened and it went away, dodged it this time I thought. Fool again!

Then about a week ago I noticed that my feet were numb... pretty much all the way from the big toe to the little toe on both feet... making it very hard to walk. And the same time my legs were feeling week. The stick was no longer keeping me on the straight and narrow so I purchased a pair of crutches.

At the same time I also lost feeling over most of the right hand side of my body. Not much inconvenience except for my hand - I'm right handed (of course!). I can't write properly as I can't hold a pen and I can't type properly... I've been a touch typist for fifteen years and I've forgotten how to type any other way! That is why it has taken several days to complete this post!

On Monday I spoke to my MS Nurse and she gave me an appointment for Wednesday. I went in Wednesday (my aim, to get steroids). Of course the first thing that happened was my bladder got a fit of nerves and I wasn't able to give a urine sample. She called in the Neuro to write the prescription; who was in excellent form, he scribbled the 'scrip for the vile blue steroids and even a stock of sleeping tablets high-fived me and was gone. One problem remaining. Not allowed to take the steroids until the urine was tested for infections. I spent a further half hour being fed water by the nurse until I managed to fill the cup... only to be told that I could take the pills as the sample had to be sent away for testing!

Back to work then... having already had a lecture from the Nurse about easing off the hours etc. Good thing that the next day I got a call saying the sample was clear and I could start the treatment.

Which brings us to Friday morning. Tablet city. Omeroprazole before breakfast (to keep the stomach safe from the steroids) - Methylprednisolone after breakfast (five vile blue tablets)... how could I have forgotten how bad they taste?!?! Next regular medication - Loratadine to stop the itching and Citalopram (because you have to take it for six months after you start feeling better). Now I rattle.

Last night I also had to take my Avonex. This was an excellent experience (for once) as this week was the right thigh which is pretty much totally numb! I then took two paracetemol and the Zopiclone so thoughtfully prescribed... and slept clear through to 9am (almost unheard of on an Avonex night).

I've just swallowed this mornings tablet pile and am once again tasting blue steroid every time I breathe in. Still, hopefully it will work some!

Some Awards

2010-01-30T14:29:00.000Z

These were given to my by Herrad - one of them all the way back in 2009. Thank you Herrad... you'll find Herrad's blog in the blog-roll on the right, along with all my other favourite MS-related blogs.

Slightly Odd

2010-01-24T17:17:00.000Z

I don't see a lot of my feet in the winter. It is cold and wet and so I wears socks (even to bed) and forgo my summer habit of flip-flops. This meant that I hadn't noticed something very strange has happened to my left foot.

The last two toes (which suffered from total loss of feeling for about the first half of last year) no longer are stretched out but curled permanently under. No wonder my feet hurt!

Ouch!

2009-11-16T00:38:00.000Z

The problem with winter is that it is cold and wet. The problem is that the grip is wearing out on my shoes. The problem is that I keep falling over. Once a week in the last two weeks. The first time I toppled off the kerb; it was wet and my shoes had only passable grip - the problem was The Stick is on my left and I fell to my right. Twisted my ankle and spent all weekend keeping the weight off.

The same thing happened this weekend... Friday, I wasn't really paying attention to my walking and slipped and fell - again The Stick is on my left and I fell to the right. Twisted my ankle (again) and had to buy an elastic bandage on my way to work. That helped and sitting down the rest of the day means it is only a bit stiff now.

In addition there has been a lot of random pain the last three weeks. Anywhere there is a muscle appears to be fair game. Hot water bottles soothe but don't cure; same for pain killers. Sleep and a large glass of wine appear to be the best solution!

I'm really looking forward to the cold weather. My internal thermostat is busted beyond belief. I seem to spend the whole time sweating and melting. I'm flinging open doors and windows all over the place. If this carries on once winter hits for real I will definitely have to take it to the Doctor.

Can you tell me where your disabled toilet is?

2009-11-08T12:12:00.000Z

Disability comes in all shapes and sizes. Disabled people in wheel chairs, the ambulant disabled, those with vision difficulties, those with hearing difficulties... the lists are long and varied. The thing a lot of people do have in common though is the need for a toilet which is larger than the average cubicle in public buildings, often additional rails and support, and the need for the toilet not to be up several flights of stairs.

Personally I have difficulty walking, mostly because I have trouble with my balance. Stairs are therefore particularly hard for me (I also have creaky knees, which is just me getting older and nothing to do with the MS!). I also have trouble with my bladder... I couldn't live without my Tena Lady pads that's for sure.

On Friday I went out for lunch, it was a work affair - we went to a very smart restaurant in Soho. Towards the end of the meal I went off in search of the facilities. It wasn't a big place and it was immediately apparent that they weren't in the main restaurant room. The Gents was just off the bar near the coat-check. The Ladies was up a flight and a half of stairs, across and landing and down some more stairs.

After lunch we went to a nearby pub. Again it was a small place... again the Ladies were up a flight of stairs on the first floor.

This is not the first time I have had this problem in older establishments in central London. Because there is a requirement only to make 'reasonable adjustments' smaller and older buildings do not have a dedicated disabled toilet on the ground floor and the facilities are usually located upstairs or in a basement to maximise usable floor space. I have been to pubs where a member of the bar staff has guarded the door so that I can use the Gents on the ground floor, I have been on trips down service corridors to doors without locks... and when all else fails I have trudged up and down flights and flights of stairs. I am fortunate to be able to manage that, there are many who can't.

Busy makes me tired

2009-10-10T13:53:00.000+01:00

Everything has been a bit busy the last six weeks or so. Ever since I came back from my holiday (and everybody else took theirs in turn) work hasn't stopped. It isn't that the construction industry has picked up lots - but maybe a few green shots are showing through. The result is that there is more work than I can fit into my three day week, and I end up doing ten and twelve hour days just to try and keep on top of things. This is all well and good, but it means that by the time I get home I'm too tired for anything much. Add to this my Monday and Friday job (which is essential to balance the books) and I don't get five minutes to myself in the week and then need to spend most of the weekend in bed recovering! The good news is, that apart from the fact that I have to remember my limits and not overdo things and wipe myself out, my MS has been stable the last couple of months. The various drugs continue to do their job and no relapses have occurred. Fingers crossed, touch wood, and all that.

This busy-ness means that I have sadly neglected the blogsphere and means I have been very derelict in posting this lovely award from Herrad. Herrad kept the original text from Celeste and so have I.

MOONLIGHT

Moonlight in this case represents the glorious brain-sharpening, mood-enhancing experience one feels when reading or seeing something inspirational in other blogs. Something that sets the tone for the rest of your day, puts a smile on your face, stimulates your work, or makes you feels awesome about life. It is not often one feels wonderful. But some days, some blogs do just that. I want to give “moonlights” to all the special blogs I encounter. There are no obligations attached to the recognition. But if you feel like it, you can pass it on to whoever has also given you that something special, what in Spanish they call “eso”, or “it”. Whatever “it” is that lifts your spirits and helps you to up your mental game.

MS Superstars

2009-09-27T12:36:00.000+01:00

Thanks to the MS Superstars raising money at Run to the Beat Half Marathon today.

News - Fewer Injection Site Reactions In Patients Using AVONEX

2009-09-14T07:20:00.001+01:00

I can echo this one from personal experience!

Fewer Injection Site Reactions In Patients Using AVONEX Versus Sub-cutaneous Interferon And Glatiramer Acetate For The Treatment Of Multiple Sclerosis

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Another trip to the Neuro

2009-09-07T11:09:00.001+01:00

Last week I had another scheduled visit with my Neuro. A little swifter than normal as he had insisted on a quick follow up to make sure that the anti-depressants took effect. I was the first appointment of the day (which is always good as punctuality isn't his strong point!) and after losing his favourite pen and complaining about the coffee we got down to business.

We ran through the usual list of suspects to gauge the status/progress of my MS. A lot of these always seem a little too personal; especially when you are asked about bladder and bowels! These are things no-one likes to think about too much even more talk about... but problems in this area are a fact of life with MS for a lot of people. I've had trouble with my bladder for years, only in as much as it is a bit weak so I use the delightful 'light incontinence' pads (a little like panty liners). Problem solved. The last few weeks I've also had some bowel difficulty - mostly 'urgency'. MS or just some bug in my system? Time will tell. Too much information... perhaps?! That is MS.

We went through the rest of the status indicators - mood (better than before); memory and cognition (not so good, especially memory which is now beyond poor). He asked me about "this monster" (my poor stick!) and I told him that I had it with my all the time if I was out and about - especially as lately I have had several falls even with the stick. Oh the indignity. I was walking along Albermarle Street (Mayfair, dahling) when I toppled over and a kind lady helped me up. Again in Mayfair Place a couple of days later I tumbled, this time losing my glasses in the process (thank goodness they weren't broken).

The Neuro expressed concern that after so many years stability the disease appeared to be progressing - or perhaps relapsing. I told him that I have these little problems all the time on and off it just depends when I'm seeing him.

I was quite pleased as he dictated the letter that my EDSS (Expanded Disability Status Scale) Score had gone from 5 to 6. Pleased until I looked it up later and discovered that 0 is normal and the higher the score the worse the result.

I was discharged with an appointment for twelve months time and instructions to keep taking the anti-depressants until at least early winter. Best of all, as I only had bloods done when I saw the nurse a few months earlier I escaped without that horror this time (last time I passed out, it dulls my enthusiasm).

What Is Ataxia? What Causes Ataxia?

2009-08-31T16:09:00.000+01:00

For the last couple of years Ataxia has been a constant and unchanging part of my life. It is what causes my balance problems and shaking hands (and by the looks of it my cold feet too!).

What Is Ataxia? What Causes Ataxia?

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News - Blood test to predict the course of MS

2009-08-31T12:34:00.000+01:00

News of a possible biological indicator to predict the course of MS is reported on the MS website. On the one hand not knowing what is going to happen next is one of the worst things about MS... but would you want to know if the news was going to be bad?

Multiple Sclerosis Society Website - Welcome to the MS Society - EBV and MS

News - MS and Smoking

2009-08-23T11:55:00.000+01:00

If you didn't already know that smoking was bad for you, here is one more reason to kick the evil weed.

Smoking Linked To Increased Brain Lesions And Brain Shrinkage In MS

Odd mini-relapse

2009-07-15T13:12:00.000+01:00

What a strange experience I had the last couple of days. On Monday I noticed that my tounge didn't feel quite right. I thought nothing more of it... until Rich asked me later if I had toothache as my jaw looked funny and my voice sounded strange. I then noticed that yes, my voice did sound strange. Reason - the end of my tounge wasn't doing what I was telling it. All muscle control vanished... only from the tip - which meant that I couldn't form 'L's or 'R's. Rich told me I sounded like Elmer Fudd! I told him it wasn't kind to mock the afflicted.

After a great deal more mocking at work the next day I rang my MS nurse and asked her whether this latest strange development was caused by MS. Possible she told me, but extremely unusual. If it isn't better on Wednesday she further told me, I'd better come and see the Neuro.

Fortunately this morning I woke up and my tounge was back as it should be after about 36 hours of odd behaviour the tip was freed from being tied to my lower teeth and I could poke out the end of my tounge again! All's well that ends well. Very strange though, not at all in the normal order of things.

Muscle pains

2009-07-12T17:34:00.002+01:00

Last week for about the third time in as many months I was suddenly afflicted by an inexplicable muscle pain. I was standing brushing my hair in the morning when the opposite shoulder (the one not involved in brushing my hair) started to hurt. It felt like I'd pulled a muscle, without actually doing anything. As the day went on the pain got worse and worse... nothing helped; not heat, not cool, not painkillers.

I spent a horrendous night not able to find a way to lie and be comfortable and eventually fell asleep in the wee small hours through absolute exhaustion. The next day I rang my MS Nurse; described my symptoms and asked if it could be caused by MS. Were the muscles hard, she asked. Like a rock, I told here. Muscle spasms she told me. Can last for seconds or for hours or for days. I asked if there was anything to be done... tablets that have to be taken all the time to work or for short term relief Valium. Really can't face the thought of any more medication (already three tablets a day plus the Avonex) and don't much like the idea of Valium either... so guess I'll just wait and see where this takes me.

No internal thermostat

2009-07-05T16:27:00.001+01:00

Like a lot of people with MS I don't look forward to the hot weather. Whatever is going on with my MS gets worse when the mercury rises.

Lucky for me I'm not suffering a relapse at the moment and all the problems I have are the ones that seem to never go away. The annoying little ones. The itching the numb bits. The fact that I can't cool down.

I never had much of a problem with Summer before. Quite enjoyed a day out in the warm and sunshine. Not anymore though. As the Summer arrived and I put away my jackets I noticed that I cannot take even the lightest exercise without absolutely melting. I sweat buckets (no matter how much anti-perspirant I wear) my feet get blisters (even in my most comfy shoes) and my face, as well as glowing with sweat, goes red and blotchy. I think I must get about ten degrees hotter - even when the sun isn't shining and it is only about 17 or 18 degrees.

As for night-time, even if I feel cool when I go to bed I wake up having thrown off all the bed-clothes and turned my PJs and bed-clothes to damp rags. The portable air-con (which are really giant fans with trays of water in the base) have been pressed into service and sit looking like R2D2 in the corner of the bedroom and the living room.

My Tuesday-Thursday office has no air-con (it broke down) but I do have a desk fan to try and keep me cool. Lucky my Monday & Friday office is fully air conditioned (oh joy) so that is something at least. All I can say now, and I'm sure I'm not alone, is roll on Autumn!

Goodbye shoes

2009-06-28T17:01:00.001+01:00

Sometimes it happens that when you have felt alright for a while you forget to take it easy and you forget that there are things that you cannot really do. Yesterday was one of those days. I was going to a garden party in the afternoon and decided that for a couple of hours I could wear my 'movie-star' shoes. Usually I wear flats as it is easier for me to keep my balance and makes my feet and legs hurt less... but I figured a couple of hours standing around and talking, what harm could it do?

The afternoon started badly as I was leaving my parents house and fell over coming out of the front door - bruising my hand, grazing my knee and making an unfortunate hole in my trousers with the heel of my shoes. A sensible person would have had emergency shoes in the car, given up and changed at that point. I did not.

After several hours of small talk and chatter, and wandering round the garden party my legs and feet were giving out. The last walk back to the car was almost impossible and driving home that evening was sheer hell. By the time I'd had a nap and settled down for the evening my legs were so stiff I could hardly walk. A good night's sleep with hot water bottles for my sore legs did help a bit.

I have to accept that if I'm going to go out I'll have to find elegant 'sensible' shoes; and be kind to myself and sit down when my legs start to hurt. Good-bye my 'movie-star' shoes, it looks like we shan't be taking any more outings together.

Bad itches

2009-06-19T18:49:00.000+01:00

Somehow, despite the fact that I filled the prescription for my anti-depressants the other week I have managed to let my prescription for the anti-histamines run out. I've never been able to figure out whether they actually stop the itching or generate a placebo effect which makes me think that the itching has stopped... either way, they work. Right now there is nothing between me and the big itch. Every bit of my body has been effected from my scalp to the soles of my feet... particularly bad are the palms of my hands and my knees (!) which I scratched so much last night I managed to draw blood. I may have to go and buy some over the counter hay-fever tablets to keep me going until the repeat prescription arrives... it's that or bathe in calamine lotion!

Even keel?

2009-06-13T16:59:00.001+01:00

The last two weeks have flow by in a rush of chaos and fatigue. When I'm not working I'm resting and when I'm not resting I'm working. I finally have a job to fill in the hours my employer doesn't want me for... which is great for my bank account but not so good for my physical well being... I'd got rather used to my lazy Fridays and Mondays in bed.

Last night was injection night. Unfortunately I woke up at three in the morning feeling the end of the side effects... aching all over my body and chilled to the bone. Luckily Rich was still awake and got me some more hot water bottles... I put a movie on and a couple of hours later eventually fell back to sleep - not waking up again until lunch time.

I felt rather low today... definitely the worst I have felt since I started taking the anti-depressants. I saw my GP last week to refill the prescription; although my Neuro had recommended counselling my GP didn't push it and just told me to come back for a review in a month. Take it one day at a time, I guess.

The good news is that everything else is completely stable at the moment (as far as I can tell!). No new symptoms and the ones that I haven't aren't getting any worse. This leaves me in a good place as summer is about to start. I really suffer for heat exacerbating my MS problems so if I can start halfway up the hill then hopefully I won't end up at the bottom!

News - MS and Sunshine

2009-06-01T14:01:00.000+01:00

It has been a long known fact that MS is less common in countries nearer the equator. Vitamin D (produced in response to natural sunlight) may be a factor it seems. Good excuse to sit in the sunshine, anyway!

Prescribing Sunshine For Multiple Sclerosis?

All catching up with me

2009-06-01T13:52:00.001+01:00

It's been a few weeks since I managed to make a post. I've been horrifiyingly busy at work, sadly not the sort of busy that can be managed but a seemingly endless stream of items requiring 'urgent' attention. This has led to trying to fit a five day week into the three days that I'm in the office... result, twelve hour days. This means that by the time it gets to Friday I'm not in the mood for surfing the net or anything much apart from spending as much time in bed as possible.

Another weekend of rest and relaxation and I'm about ready to face the week. The array of medication seems to be keeping most things at bay (for now) the itching has eased off again and everything else seems pretty stable too. I think that the anti-depressants are working too, the crushing hopelessness of a few weeks ago seems to have dissipated some and I've managed to actually 'do' some things this weekend instead of just lying in bed sleeping. I'm still feeling achingly tired, but as long as I can get through the next three days I'm not complaining.

Side effects and sleeping

2009-05-17T19:35:00.001+01:00

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?

2009-05-15T18:48:00.001+01:00

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

2009-05-15T18:37:00.001+01:00

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

2009-05-13T18:01:00.001+01:00

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

2009-05-12T13:51:00.002+01:00

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

2009-05-11T18:48:00.002+01:00

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

2009-05-11T18:01:00.002+01:00

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

2009-05-10T18:03:00.001+01:00

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

2009-05-10T15:08:00.003+01:00

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

2009-05-09T16:58:00.001+01:00

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

2009-05-09T13:18:00.002+01:00

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?

2009-05-09T06:16:00.002+01:00

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

2009-05-08T13:24:00.002+01:00

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

2009-05-08T13:03:00.002+01:00

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

2009-05-08T11:26:00.004+01:00

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

2009-05-08T11:25:00.002+01:00

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

2009-05-02T17:22:00.003+01:00

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

2009-05-02T16:13:00.000+01:00

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