That happens to me sometimes too! Been there done that got the t-shirt.

I thought before I go further into discussing the nature and effects of living with Multiple Sclerosis, I must make clear the point of it not being something that is a normal daily thing that everybody goes through. Which can be very condesending and even hurtful to people with MS.

 I recall when I finished college, I had suffered another relapse when I had gone on to a different level of study, after which I was advised to 'step up' a level in terms of treatment and take medication which pretty much is the chemotheraphy of MS. At the time I was attending appointments in different fields of medicine (from physiotherapy, psychology, neurologists to more frequent visists to my GP), the cream of the crop being a week in which I had more appointments than the amount of days in the week! I saw an old family friend who asked what I did in my life, to which my response was 'home to hospital and home to hospital' and his response being; 'yeah, I've been there done that and have got the t-shirt' because he had suffered from a trapped nerve. That being the most severe case if anything at the time.

Be it an attempt of sympathy or even one of comfort, the one thing that gets many MSERS boiling is the person who claims to understand the predicament when they have no idea the difference between a brain and a limb. Take for a more common example fatigue, something which is a symptom the majority of  MSERS suffer from daily and therefore attend clinics and classes on how to try and overcome the barriers it causes only for a random person to say 'we all get really tired sometimes, we just have to deal with it'. Now most of us would think excuse me you don't really have a problem waking up in the morning and getting to the breakfast table safely and even further you don't have to live knowing and seeing your body pretty much crippling away!

To put things in context; a person living with MS generally would require three ( or even much more!) times the amount of energy and effort a healthy person would need to do the simplest of things in life. Although people may have a few aches and pains now and then, maybe not understand something when they are shown it or even get lost in a new shopping centre, but when that is something that you live with everyday and  go through numerous tests and doctors to try and understand a possible root cause, it really isn't something which a 'healthy' person may understand in a literal sense as most people with Multiple Sclerosis have pretty much forgotten the true definition of being 'normal' or 'healthy'. It really takes effort to just be awake!

Just to finish off with something I've heard many people with MS say when this may be a topic of discussion, that we have numerous  MRI scan folders and files that show our damage so a broken leg or a headache due to missing out the mornings caffeine fix is really not the same as having legs which are pretty much plastic due to damaged or even dead nerves or pain like a boxing camp inside your own body! Words are cheap to those who are in the stands and these comments generally seems to be from  people who like to talk more than they listen which can do more harm than good and as the symptoms of MS vary so much it is a vital point and a need of realisation that there is a huge difference when we are in the world of neurology. Just like there is a difference between a paracetamol and morphine, there is also a huge difference between the normal bumps in life and the almost constant earthquakes that people with MS or any other abnormal health condition experience very often!

The start of the confusing journey! The types and disease progression.

If it hasn't been highlighted till now, Multiple Sclerosis is a very very confusing condition, there are several forms of the condition and they all affect each individual MSER in their own special way (yes, literally speaking). There are four main known forms and they are; relapsing remitting, benign, secondary progressive and primary progressive.

On diagnosis, you are probably told that it's multiple sclerosis and if you're lucky given a whole load of scriptures and websites to get more information about the disease. If and when you read the doctor's write up of your case, there usually is a mention of one of the above names of the condition.

Most people are diagnosed with relapsing remitting multiple sclerosis, this is literally as the name suggests, something happens, there is an improvement to a certain degree, either full or partial then it happens again and that's the dirty cycle it follows over and over again. The repairing of the myelin sheath (the insulating layer of nerve cells) of the nerve cells are done by cells called oligodendrocytes ( when you figure out how to pronounce it, it makes you feel intelligent!) so in the remitting stage this continues to occur with repair being complete at a similar rate to a dodgy plumber fixing your bathroom i.e. it never gets 'better' completely, so obviously over time disabilities can be a lasting effect because of the damage with symptoms lingering on after the immediate symptom phase. An example for this would be, after an episode of loss of sensation, although complete sensation may return the strength in the area effected may not return.

After a certain period of disease occurrence the oligodendrocytes pack up their bags and pretty much retire, now after the damage there's nothing that tries to repair the nerves. The condition is then termed secondary progressive MS and it pretty much is downhill from there at a rate that is different to each and every person. Majority of people who start with relapsing remitting will go on to the secondary stage of the condition. Even though it sounds terrifying it actually really doesn't have a stereotypical pathway, I met a guy in a MS gym class who had SPMS (trust me the letters make life easier!) who was doing more exercise and was more able than me!

Benign MS is as the name suggests, you have a small amount of relapses which is followed by a complete recovery. Usually this can only be diagnosed after 10-15 years after initial disease activity.

Primary progressive has this name because from the first (primary) symptoms it is progressive. Symptoms gradually get worse over time, rather than appearing as sudden attacks (relapses).

MS in children: Although ms is usually developed in early adulthood it can happen in teenagers or even kids but the likelihood of this is fairly rare and there are only a few 'special' folk ( like me) that join the crew early on.

Disease progression is thought to occur through the occurrence of the relapses and also in 'invisible' manner which is how Multiple Sclerosis seems to work in it's mysterious ways, if I didn't already mention, MS is a very very confusing condition!

The land of limbo and the reality of relief.

Because of the very invisible nature of MS in it's initial stages, MSERS tend to be very stressed out and confused as to what is actually happening in their bodies. The effects of the damage due to any new lesions ( damaged nerve) usually evolve over a period of time. Relapses ( the event in which the new lesions arise) do not occur all of a sudden, rather over a nights sleep the initial effects may be felt in the morning but the full blast of the lesion usually happening over a period of a few days.

Take for example a very common symptom for the 'starting' of MS, the loss of sensation. Initially one may feel they had slept in an awkward position over night or the sudden weather change (which actually seemed to be something that induces a relapse), but when that feeling doesn't seem to go away and it affects even the basic daily rituals like having a shower and the water feels hotter or colder than usual or walking down the street takes more effort than usual, it leads a person into a land of limbo.

Because of the nature of the human body, the nerves are repaired to a certain amount ( will be discussed later on) so after the first few times the relapses may occur, it can easily go to the back of our minds, especially if you are busy in things like work or studying ( I was at the start of my GCSEs when it crept up on me), the diagnosis is delayed further. When the same things keep occurring over and over again, we would attend our GP surgery, the last thing on a general practitioners mind would be MS, so the immediate things are tested first, like things like diabetes ( especially if you're Asian and it's almost a norm in your family like me!) And this can easily lead to a misdiagnosis, many people have been diagnosed with lupus (an inflammatory disease caused when the immune system attacks its own tissues) due to a main symptom shared by both conditions ( fatigue).

The next 'stage' being when relapses continue to occur and are worse than at the beginning and you go from acing your exams to being perceived as dyslexic. Then you'd see a specialist (mine being exactly like DR. House from the TV series!) who would carry out even more tests which can be even more worrying! Those tests usually being blood tests ( to eradicate things like diabetes), neurological examinations and evoked potential tests (the assessment of responses and measuring the time it takes for nerves to respond to stimulation), then the big two being a spinal tap ( fluid taken from a patients lower back to see whether there is abnormal of white blood cells present) and how most people are diagnosed with MS, MRI scans which display damaged nerves ( see pictures below, a normal brain, the first being me, the shiny dots displaying damaged nerves) my teachers really didn't lie when they called me a 'bright' lad!

                               
The fear and confusion in the limbo land would naturally lead people to research as much as they can what is possibly happening, especially with information at our fingertips with the internet. Initially I thought perhaps a trapped nerve or so, but I had also come across MS and I brought up the question about it with my science teacher at the time. The many questions swarm a persons mind and one of the most problematic things again were the kitchen doctors, who were adamant the loss of sensation was due to lack of exercise (which as mentioned in the previous post, that was the complete opposite), eye damage due to me revising on the computer, some trying to become exorcists and some even stating without any knowledge that the spinal tap would hurt me for the rest of my life as it was the same thing given to women in childbirth! Some people even accusing MSERS of lying for whatever reason went through their minds!

It was completely different from the epidural and it could possibly leave a person physical disabled if done wrong, but their presence did teach me many things in my life with MS and has prompted me to get the facts from the source to understand things in a more studied and understood manner rather than makeshift ideas! I don't intend to embarrass or mock people who tried to think out of the box, as I plan to discuss later, it really can be a huge problem.

My mini rant over! Although every MSERS experience would differ greatly compared to mine which I've briefly mentioned, the one thing many share, regardless of how much it may change or lives, is the relief of the final diagnosis. The diagnosis finally naming something we tried to figure for usually a long and dark time and a name for us to work with, although our future may have felt even more of a blur and a concern (many new questions arise) but developing a relationship almost with medical professionals who understand and can assist through any issues that may occur.