Ouch!

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?

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

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

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

News - Fewer Injection Site Reactions In Patients Using AVONEX

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

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?

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

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

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

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

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

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

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

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?

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

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

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

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

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

News - Myelin Repair?

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

Discovery of pathway that reactivate myelin repair

Back to not liking Friday

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

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

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

Trip to the Neuro

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

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

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

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

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

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

Feeling not so bad

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

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

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

News - Steroids and Drugs

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

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

Memory games

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

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

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

Itches and other things

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

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

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

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

News - Stem Cells

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

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

The dreaded fatigue

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

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

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

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

News - Tysabri

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

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

Where is your disabled toilet?

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

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

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

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

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

DMDs

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

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

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

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

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

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

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

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

Remission and Relapse

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

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

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

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

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

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

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

Next - DMDs

More Neuro and the MS Nurse

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

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

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

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

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

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

Next - Remission and Relapse

The Neuro and the MRI

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

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

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

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

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

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

Next - More Neuro and the MS Nurse

Visits to Eye Casualty

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

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

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

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

Next - The Neuro and the MRI

How it all began

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

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

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

Next - Visits to Eye Casualty