Where Are You At?
I know that most of you will know quite a bit of the information contained in this page already. However, if you are newly diagnosed and want to glean a bit of knowledge on the ‘basics’ of MS, then this page is for you.
For a while, I was actually too scared to read through this information. It made my diagnosis too real and I felt that I didn’t need to know all the gritty details of this illness. So, I stuck my head in the sand, like an ostrich, and pretended that nothing had changed. I was still the same old me living life however I pleased and trying not to worry about this tidal wave coming in the distance. After a few, more serious, symptoms, I decided that it was time I faced reality and learnt all I could in the hope of finding a real solution to my big problem.
If you are ready, have a read through the information contained here. It will help to give you a more accurate picture of what you can expect with MS and hopefully spark your motivation to avoid progression at all costs!
What is Multiple Sclerosis?
The way my neurologist explained MS to me was by pointing out the lesions on my brain and spinal cord and calling them scars or ‘sclerosis’. There was more than one, in fact there were multiple scars. Three or four if I remember correctly. Therefore I had multiple scars/sclerosis. He was relaxed and instead of throwing a ‘heavy’ on me and just announcing the serious illness I had, he helped me understand what it was first. It was a bit less daunting and more easily digestible when delivered this way. He went on to explain that MS is an autoimmune disease which involves a fault in the immune system, causing it to turn on the body and attack the myelin sheath of the nerves. The immune system mistakes the myelin for a foreign body and attacks it.
Now, I had done Biology, up to the highest level at school, so I knew the important function that the myelin sheath had. Basically, it is a fatty layer that surrounds the neuron, protecting it and helping the nerve impulses travel quickly and accurately. Without the myelin sheath around our nerves, our reactions, movements and thoughts would be very slow. In MS, the myelin sheath becomes damaged and inflamed which disrupts messages travelling along nerve fibres. They can slow down, become distorted, or not get through at all. Inflammation is the body’s way of recognising a problem and finding a way to heal it. For example, when you sprain your ankle it swells up immediately. The inflammation is actually part of the healing process but it can make us feel worse in the short term.
Inflammation gives rise to the symptoms we experience. When the immune cells retreat and stop attacking, the inflammation can also begin receding. If the attack wasn’t too long, almost full functioning will be restored to that area. Most of the time, there is a bit of permanent damage and minor residual symptoms remain. I had an attack two and a half years ago that affected my right hand and caused a tremendous amount of itching on the right side of my neck. These symptoms faded after four weeks but to this day, I still have mild stiffness in my hand and itching on my neck that comes and goes. This is usually related to my stress levels.
Probable Causes of MS
If only we could rewind through the entire history of our bodies and see what went wrong and where. We could go right back to the beginning and watch as our bodies were nourished and built by our mother’s breast milk in the first few months of our lives. Wouldn’t it be amazing to see what actually happened that lead to us developing Multiple Sclerosis? Was it a vitamin deficiency or perhaps an over abundance of stress hormones, or a result of years of not feeding our bodies what they needed? Perhaps a genetic disposition? As I’m sure we have all realised by now, it is very difficult to answer that question with any certainty. Our MS was most likely caused by a combination of many factors that created the perfect conditions for its development.The cause of MS is actually still not definitely known. However, medical researchers believe that a combination of factors may be involved. The most recognised scientific theories about the causes of MS include the following:
1. Immune System Goes AWOL
It is now generally accepted that MS involves an abnormal response of the body’s immune system that is directed against the myelin sheath of the nerves. it is not known why the immune system start attacking. A very low level of Vitamin D has been implicated. A leaky gut that allows large food particles into the blood stream has also been blamed. The immune system is mobilised to attack these particles and then crosses the blood brain barrier to do its damage.
2. Environmental Causes
MS is known to occur more frequently in areas that are further from the equator. Studies of migration patterns have shown that people born in an area of the world with a high risk of MS who then move to an area with a lower risk before the age of 15, acquire the risk of their new area. This could be related to the amount of sunshine and subsequent Vitamin D that people receive.
In addition, this could be related to the type of food eaten in that area. In areas where a plant and fish based diet is largely consumed, the percentage of people with MS is far lower than that of urban areas where a diet of junk food is more common.
3. Serious Infection
It is possible that a virus, contracted during childhood or another infectious agent is the triggering factor in MS. Viruses are well recognized as causes of demyelination and inflammation Many viruses and bacteria, including measles, canine distemper, human herpes virus-6, Epstein-Barr, and Chlamydia pneumonia have been or are being investigated to determine if they are involved in the development of MS, but none have been definitively proven to be a trigger for MS.
While MS is not strictly hereditary, having a first-degree relative such as a parent or sibling with MS increases an individual’s risk of developing the disease several-fold above the risk for the general population. Common genetic factors have been found in some families where there is more than one person with MS. Some scientists think that MS develops because a person is born with a genetic predisposition to react to a random environmental agent that and upon this exposure, an autoimmune response is triggered.
Early MS Symptoms
If the myelin sheath becomes damaged, there are range of symptoms that can arise. As the central nervous system (CNS) links all bodily activities, many different types of symptoms can appear in MS. The specific symptoms that appear depend on which part of your CNS is affected and the job of the damaged nerve. Everyone is wired differently and so will have a similar but mostly unique experience of MS. The MS Society in the UK says that people can have different symptoms at different times and, although some are very common, there is no typical pattern that applies to everyone. These are some of the early signs and symptoms of MS:
- Optic Neuritis: A problem with vision, usually in one eye but it can affect both eyes. Some women have reported that they suddenly develop a case of blurred or double vision. In most cases this early symptom only lasts for a few days.
- Numbness or tingling: These were my first symptoms. I remember a distinct feeling of numbness in the one side of my face. About a year later, it was one side of my entire body that had lost sensation.
- Disorganised thought or foggy mind: You feel as if you just cannot think clearly and could start to become forgetful.
- Clumsiness or a lack of coordination: You start bumping into door frames or dropping things while you are cooking. Knocking over glasses at the dinner table was a favourite of mine!
- Loss of balance: High heels are just not feasible anymore!
- Weakness in an arm or leg: I started feeling this in my right arm as I was unpacking the dishwasher one day. It just felt really tired after only a few reaches to put mugs away in the kitchen cupboard.
Common Symptoms of MS in Women
Fatigue in MS is not just an ordinary tiredness, like you might get at the end of a hard day’s work. It’s as an overwhelming sense of tiredness that often occurs after very little activity. Please see post on fighting fatigue for more detailed information
Balance & Dizziness
These symptoms might mean you are wobbly on your feet from time to time, or you might need to move with more care than before to avoid losing balance. Avoid wearing high heels and do exercises such as pilates and yoga to work on your balance.
This is a scary one because you may just start to forget things like a pot of boiling water on a stove or a coffee date that you organised with a friend. In the early days, it was not unusual for me to get a call half an hour after I was supposed to be somewhere, asking me where I was! I used to be able to keep my entire diary in my memory but now I find that each details needs to be written down otherwise it risks being forgotten.
Most people with MS will experience a bout of ‘brain fog’ once in a while. You feel like you just can’t make decisions or think clearly about everyday tasks such as what to make for dinner. Once on the MS Diet, this was one of the first symptoms I felt relief from.
Depression is a very common symptom in people with MS, especially women. It’s not unusual to experience depression, stress and anxiety when you have MS. It is diagnosed in fifty percent of people with MS at some stage of their illness. This statistic only refers to those with clinical depression not those with a more subtle form that comes and goes but still has a tremendous impact on the person. It definitely has the potential to worsen the disease so it is important to recognise the signs of depression early.
Your ability to talk and communicate your thoughts may be temporarily altered. Speech difficulties can come and go throughout the day, perhaps lasting only a few minutes at a time. This may be a symptom that appears during a relapse.
Bladder problems in MS either have to do with storage or emptying. When the nerve pathways in the spine are interrupted, even a small amount of urine in the bladder causes it to contract. This gives rise to an urgent need to visit the ladies room quite frequently. If this is severe, incontinence will be a problem. The other main type of bladder disorder is to do with emptying. The bladder muscles don’t work in coordination, which makes urine flow poor and interrupted, and bladder emptying incomplete. This can be a problem if you think you have emptied everything out but there is still some inside.
MS can affect female sexual function. Around 50 to 80 per cent of women with MS will experience some degree of sexual dysfunction at some stage during the course of their MS. Women with MS may experience symptoms including loss of sex drive and may find it difficult to achieve orgasm.
Periods and Hormones
Women with MS say that their symptoms often feel worse around their periods and during the menopause. It is now more recognised that hormones play a role in relapses and symptoms. For example, most pregnant women with MS will feel very well and experience very few symptoms during their pregnancy. However, within six months of giving birth, it is expected that they will experience a return of symptoms as the hormones settle down. You can read more about this on the post about the role of hormones in MS.
Stiffness & Spasms
Increased tone (resistance in the muscle) can mean muscles are slow to relax, and this can cause stiffness. Depending on the muscles affected, this stiffness can make it difficult to perform delicate movements with the hands and fingers, or make larger movements difficult. This can obviously affect walking, for example. When affected muscles stretch, spasticity may also cause them to jerk in an uncontrolled way – a spasm.
About a third of people affected by MS experience pain at some time. Pain can be one of the most difficult ’invisible’ ms symptoms to describe. Pain might feel like squeezing, crushing, cold, hot, stabbing or burning, or a tightness in the chest known as the MS hug. It is often difficult to know if pain you are experiencing is related to MS or just a pulled muscle or pinched nerve. Give it a few days and you should be able to start recognising the source of the pain. Often, MS pain is more generalised and specific, focused pain is something else.
I hope this helps clear a few things up for you or hopefully you have learnt something new! I have learnt not to be scared of this info. We need to know the monster we are facing so that we can devise strategies to defeat it. The MS diet is one such strategy. In combination with reducing stress levels and regular exercise, I am remaining healthy and symptom free. You can too! I hope to chat to you soon!