So, many people see and hear the effects Multiple Sclerosis has on me, but why? What is causing me to drag my feet? Go dizzy? Constant pins and needles?Numbness/Paralysis? Fatigue? Double vision, to name but a few? To understand MS, it helps to understand how the central nervous system works. MS is believed to be a chronic autoimmune disease that attacks the central nervous system. The central nervous system consists of the brain, optic nerves, and the spinal cord. In order for these nerves to properly transfer the electrical signals to and from the brain that allow us to move our muscles or feel pain for example, these nerves are coated with a substance called ‘Myelin’, which builds the ‘Myelin Sheath’. The myelin sheath is a natural insulator, just think of it as a jacket your nerves wear – and a kick arse one at that. It is believed that in MS, the body’s immune system (which is supposed to help fight off foreign substances like viruses so we don’t get sick) malfunctions and starts attacking this myelin coating around the nerves, and it is for this reason why I am prone to picking up infections rather easily. Sound complicated? It did for me, so the below was how it was explained to me when I was diagnosed;
Right now I am sat here next to a lamp as well as my phone plugged into a socket, they run on electricity. Our bodies run on electricity as well, so think of it like this; a light switch leads to a copper wire, which leads to a light bulb. When we want to turn the light bulb on we flip the light switch and electricity is sent from the switch to the light bulb via the wire making the bulb turn on. Our brain is like the light switch, our nerves are like the copper wire, and our muscles (I will use my legs as the example) are like the light bulb. If we want to turn our muscles on, we ‘flip the switch’ in our brain which sends an electrical signal across our nerves (the wire) to turn that muscle on (the light bulb).
Now, let’s apply MS to this analogy; If you stripped the rubber insulation off the copper wire would your light bulb work properly? Probably not, well, not safely at least with parks flying about. So, the wire represents our nerves, but our nerves aren’t just one solid piece of material, just as the copper wire isn’t just a solid piece of copper. There are multiple parts to both our nerves and electrical wires. With nerves, you have the actual nerve fibre itself which is covered in the insulating myelin sheath (remember that jacket?) much like our light bulb’s copper wire is covered in an insulating rubber sheath. So, just like the light bulb won’t work properly after it’s wire’s rubber sheath has been stripped away, your muscles won’t work properly after it’s nerve’s myelin sheath has been stripped away.
Nerves control everything in your body from lifting your arm, giving someone the middle finger, knowing if an object is hot or cold, to feeling a burning cigarette pressed against your hand (I use this as an example as this has happened to me and I didn’t feel it). Even things like maintaining your balance when going to the loo requires the proper functioning of nerves. So if the myelin in your central nervous system is damaged, that would render your nerves incapable of functioning properly and this of course means that various parts of your body may malfunction. There are oh so many symptoms of MS and not everyone experiences them all. It all depends on where the myelin has been damaged in your central nervous system, where the ‘rubber insulation’ is missing along your wires and this is why no two people with MS are the same. In my case my main symptoms are; my vision, constant pins and needles in my feet, mobility, balance, coordination and numbness/paralysis down parts of my left side; my MS has taken an aggressive form and I’ll explain the different types of MS below.
Types of MS
Four disease courses have been identified in MS: Relapsing-Remitting, Secondary-Progressive, Primary-Progressive and Progressive-Relapsing, and within each one of these you will get mild, severe and aggressive forms. Once you have been diagnosed with MS, it is with you for life and the characteristics your MS shows will fit into one of the mentioned, which I have explained below;
Relapsing Remitting MS (RRMS) – This is the most common type of MS, which around 85% of people with MS are initially diagnosed with. People with RRMS will have attacks of symptoms known as ‘relapses’ or ‘flare ups’ where new or old symptoms appear. These can last from a couple of weeks to a few months which will fade away either partially or completely, and there is no apparent progression of disease. Often people make a good recovery from a relapse with complete remission.
Secondary Progressive MS (SPMS) – This is a stage of MS which usually comes after RRMS in many cases, around 65% of people who are diagnosed with RRMS will eventually transition to SPMS. This means that the disease will begin to progress, with or without relapses.
Progressive Relapsing MS (PRMS) – The least common of the four, it is characterised by steadily progressing disease from the beginning and occasional flare ups along the way. People with this form of MS may or may not experience some recovery following these attacks; the disease continues to progress without remissions.
Primary Progressive MS (PPMS) – This is the least common of the 4 disease courses as it is a steady progression from the beginning without any distinct relapses or remissions. Around 10% are diagnosed with PPMS.
A diagnosis of MS can be a lengthy and frustrating process as no single test can diagnose it, it isn’t a case of just taking a blood test. There are many neurological illnesses which mimic MS and these need to be eliminated before a definite diagnosis of MS can be made, most people who experience unexplained symptoms won’t have MS. First and foremost your doctor and neurologist will ask you lots of questions about your past symptoms and problems, this is done as it can help explain any other problems that may explain your current symptoms.
You will then undergo a physical examination; remember, MS symptoms come in a variety of packages and not everyone will experience the same ones so this test will depend on what you tell the neurologist you are experiencing. I can’t stress this enough, as little or insignificant it may seem, tell them everything, I didn’t tell my doctor or neurologist I was having toilet urgency and sleeping a lot more, not to mention I had to dragged to the eye clinic kicking and screaming, for example, but these are 3 of the many symptoms of MS. OK, Mum talk over but please tell them! You will undergo checks for changes or weaknesses in your eye movements, leg or hand coordination, balance, sensation, speech or reflexes. A Neurologist may suspect MS at this stage but a diagnosis will not be given until after other test results confirm MS and these two tests are MRI and/or Lumbar Puncture.
An MRI will create a detailed image of your brain and spinal cord, this will locate the exact location and size of any damage or scaring. The scaring will show up as white spots on your brain and/or spinal cord, whilst an MRI will confirm the diagnosis in over 90% of people with MS, a lumbar puncture may be required if further confirmation is needed. A Lumbar puncture involves a needle being inserted into the space around your spinal cord and a sample of fluid that flows around the brain and spinal cord is taken and tested for abnormalities. People with MS usually have antibodies in their fluid and why this may be carried out if a definite diagnosis cannot be made from the MRI.
With everything with MS (and its mother) explained, hopefully my life with MS and the following will be a bit clearer for you as I will be getting MS tech on yo’ fine arses. In my case, I was diagnosed with RRMS in 2013 with an MRI on my brain and spine, of which 6 scars (lesions) were found on my brain. It was only after receiving the diagnosis and going back to my doctor, did she tell me that she suspected MS when I came in with a dropped foot in 2004 (I was 16). During the course of the 8 years following this, things had slowly but surely been ‘creeping’ up on me; lack of balance and coordination, going dizzy, pins and needles in my feet, fatigue, slurred speech, confusion, dropping things…the list goes on, I did not go to the doctors for any of these as they weren’t happening all at the same time and just a mild annoyance every now and then. Remember me saying that a diagnosis of MS can be a lengthy one? Well, for me it only took just over a month from the point I FINALLY went to the doctors with that ‘trapped nerve’ as everything which had been happening over the past 8 years had all hit a point in a horrendous relapse (here is my 1st post leading to my diagnosis for those who have not read/wish to re-read) It is believed that many people with RRMS usually go onto develop SPMS 10-15 years after diagnosis. With that in mind, I have been having symptoms and relapses which I have made full recovery from for at least 8 years before my diagnosis. It is within the last 18 months, I have experienced back to back disabling relapses which I haven’t fully recovered from and my mobility is progressively getting worse. In March this year, I fell into to the Rapidly Evolving Severe Relapsing stage of RRMS. With me still having relapses and a gradual progression of disability, I am in the limbo stage between RRMS (RES Relapsing MS is the severe form the RRMS stage) and SPMS, you can still get relapses with SPMS, although you don’t tend to make a full recovery, which makes it hard to distinguish the two, and why the neurologist is looking for at least 6 months of clear progression separate from my relapseses. You see, it is all MS, it will go in one direction, go down a few back street and have toilet breaks at its own pace. I am Hannah with MS, as you have read it is so complex that even I get confused at times.
I had 6 lesions on my brain in Feb 2013, my most recent MRI has come back with 18 and I have requested my scans to not only show you exactly what it looks like in this head of mine but I don’t know about you, I’d love to have a pic of my disco light brain in the photo album of life. My scars are now legal to drink and buy a TV on finance! In regards to my central nervous system; it’s my optic nerve and brain which are supporting the lesions, I do not have any on my spine. The purpose of my Tysabri infusion is to reduce the relapse rate by upto 67% (compared to the 33% when I was on self injections with Rebif), whilst not the main purpose, Tysabri has also proven to reduce the risk of progression of disability, also. With MS being a silent disease for the most part, a lot is happening underneath, which I hope may seem a bit clearer for you all. With my cognition being effected, I need to stress, that whilst I find it difficult to carry out a conversation, recall the words and information I need to say, getting the words from my brain to leaving my gob, express myself etc, everything is taken in, I just can’t express myself the way I used/want too both physically and mentally. If I remain silent, ‘wrap up’ a conversation or avoid situations for example, it is not me being rude, it is for the reasons I have just mentioned and why I found writing this down in the detail I have in this post the best way to express this. It has taken me over a week, spending most evenings to get everything to come together in my head and typed up, but I did, I got there!! You see that’s just it with MS, everything is still there in this head somewhere. It’s just there are just 18 road closures blocking the nerve roads to enable me to get that all important message on how to walk, for example and I am having to take many diversions/side roads (with a pit stop at McDonalds) to get there. Yes, the wheels may be punctured, windows smashed and petrol is on red when I get there, but I get there none to less.