Dry Shampoo, ECG's and Ward Moves...

Still Monday 23rd December, post Neurologist visit. I was feeling a wee bit low and also unwashed - no showers in the ward - so my Aunt Heather came to visit me and brought me some dry shampoo so I could 'wash' my hair.

Neither of us have used dry shampoo before so we did not know what to expect. Heather sprayed it on my hair, in the middle of the ward, and made everyone cough. One of the doctors told us off and made us open a window, which was another challenge in itself! 

My hair went white!! An age transformation in seconds. However, it quickly went back to normal colour once Heather brushed it through my hair. It was not like having a shower but at least my hair was less greasy and I felt a tad normal again. Though some people would say I have never been normal.

Another interesting aspect of this day was getting another ECG.. I am not sure if it was the affects of the dry shampoo or seeing the neurologist but I started getting chest pains, so had to get an ECG to make sure my wee heart was ok. And thankfully it was, but proves I have a heart!!

Heather was my first visitor of the day, she came during working hours - being part of the trust she could walk straight through. Then I had a pastoral visit from my parent's minister - which was nice. 

At visiting time more visitors came, my bed was crowded - there was Mum and Dad, my faithful visitors, my Nana, Uncle Neil and then Phyllis and David. It was nice to have visitors, helped to see them all and was even taken out for coffee, to the hospital cafe, by Phyllis and David. Was nice to get off the ward and eat some fruit!! 

As I said its nice to have visitors, but once they all left, it was lonely again. The quiet ward was shortly about to become noisy which would result in me leaving my ward for another ward. We had an interesting character come in and she was shouting and hitting all around there, so for our own protection the nurses mover me and the other person in my ward over to another ward. Resulting in people worried I had disappeared when they came to see me as I was not in my normal ward. 

I am glad they moved me as I could hear her screaming from where I was. She was in a whole bay my herself..... it was scary actually. 

Visiting time came again and more visitors - my parents,  Uncle George and Aunt Joan came and my lovely Scottish friend Anna also came. You know one of the best things about being in hospital - goodies... my bedside table was full of chocolate (was still eating it two weeks later). 

Oh and I never got my MRI which I was promised I would get. Went to sleep hoping it would come on Tuesday. I was in a deep sleep when at 5am a nurse came and woke me up and told me I was being moved again, so here I was half asleep in my bed being wheeled over to another ward. The ward I was on was a transition ward and this new ward was the being admitted ward (had no idea when I was leaving at this stage - was thinking I would be in over Christmas!) 

Monday was an eventful day. What would Tuesday bring?

The Neurologist...

Monday 23rd December - second day in hospital. After breakfast, medication and my obs been taken, another doctor comes to see me. He says what I have is not a migraine but they are not sure what it is but cannot rule out a brain tumour. He said a neurologist would be along to see me sometime during the morning.

A neurologist...I wondered if he would look anything like Dr Derek 'McDreamy' Shepherd from Grey's Anatomy. Why is all doctors on TV are handsome (calling ER's Dr Ross aka George Clooney) but in reality it is not true!!

Dr Doug Ross (Paeds)

Dr Derek Shepherd (Neurologist) 

After the doctor left, I lay on bed listening to music awaiting the neurologist and along he came, nothing like Dr Shepherd but still a lovely man. He made me tell him what was wrong with me, hit my knees and legs with some hammer thing to test my reflexes, ran a sharp pin up and down my legs and feet to test the sensation (the sensation in my left side was hardly there compared to my right side). He also made me stand and walk to test my balance.... could not walk without having someone or something to lean on in case I fell as was so dizzy and balance was bad due to eyes not working together.

I asked him what he thought was wrong with me and he said he was not sure, he needed me to have an MRI before he could confirm anything. And I was to have the MRI later that day or Tuesday.  I asked him if he thought it was a brain tumour and he said he was not sure... he was not giving anything away, very cautious.

Blobs on the Brain!!

Sunday 22nd December - amazingly I slept through the night, its good what ear plugs and pain drugs can do for you. 

So here I was in hospital, my first hospital stay, not knowing what to expect. I had more obs done, was given more drugs and breakfast came - porridge (which was absolutely disgusting) toast and tea. 

Visiting hours were not until the afternoon so had morning to lie in bed and think, sleep, pray and listen to music oh and reply to texts as people were wanting to know how I was. 

I was told the doctor would come and assess me and she arrived and asked me to tell her what was wrong with me (again!) and then had to do more balance tests. She came to the conclusion I was sick and she did not think it was a migraine but the CT would tell them more. So after half hour of waiting I was whisked off to get my brain scanned. And I can not confirm I DO have a brain for all you non-believers! 

After CT, went back to lying on my bed. There I was lying on my bed, not being able to see well or walk well and was scared that there was something seriously wrong with me, but despite that I felt a peace surround me especially around 10.45am.... Mum was texting me seeing if I was OK and I told her not to worry people were praying for me. And I asked my friend later that afternoon were you guys praying for me in church around 10.45 and she said yes. Its amazing how pray works. I had a peace I was being looked after. 

Lunchtime came around - vegetable soup - and it was nothing compared to my Mum's vegetable soup. Think you really appreciate home cooked food after experiencing hospital food. Where is James Martin when you want him?

Visiting time came and I was excited about seeing people. My Mum and Dad came, my friend Phyllis and even my Uncle George popped by on his way from doing pastoral visits. It was nice to see them and sad to see them go. I was meant to be reading at the Carol Service that night but couldn't due to being in hospital - I was disappointed. I told Phyllis I would do a video link up from hospital bed but she kindly reminded me I could not see very well. I tried to say the verse from memory but ended up mixing two together!! 

My visitors left me at 5pm and 20 minutes later the doctor came to tell me the results of my CT. He said, I am sorry but we can't let you go home tonight. I asked him why and he said. we have seen your CT and you have shadows/blobs on your brain. I asked him what was wrong and he said they did not know. Being the ever optimist I said is it a brain tumour and his reply was that they couldn't rule it out. I was very emotional and scared.

The doctor left and I cried. I needed to talk to someone, so I rang my friend and told her and she was shocked... the last thing she said to me was, we need that CT to be clear. And it wasn't clear. I think she was upset at my news and said to me, I can't come visit I have to go to church. I reassured her it was OK, I just needed to calm myself down before rang my parents as did not want to me a blubbering wreck on the phone with them.

So next phone call - my parents - not a good phone call, went quiet at their end. It was hard for us all, but I knew they would be back at visiting time. 

Visiting time came and back came my parents, a very sober visit this time. But at least we knew it was not a migraine - oh how I would love to meet those two doctors again for giving me the wrong diagnosis. 

The peace I felt in the morning was still with me, but I still went to bed that night feeling a bit low and emotional and scared. What was to come the next day? 

Its just a Migraine!!

On Thursday 20th December, I woke up still the same - dizzy, blurred and double vision, balance bad, headache, numbness, pain behind eye etc - I felt I was getting worse. I rang my own doctor explained what happened and he prescribed migraine pills. I took them and slept off and on all day.

Friday 21st December, I woke up the same with the same symptoms and head still banging despite the migraine pills. I rang my doctor again  - got another doctor who prescribed anti dizziness pills and told me if I got worse to go back to doctor. So here I am on more pills. By this stage I was take Citalopram, Bethathistine and Naproxen. I was taken off the migraine tablets that day.

Saturday 21st December, I woke up the same with the same symptoms. Though told myself I was getting better, but my lunch time I thought I cannot go on like this - it is definitely not a migraine. I rang the on call doctor who told me to go straight to Antrim Hospital and demand a CT scan. So off Mum and I went.

I got to casualty and after we are initially seen by the triage nurse, we had to wait three hours before we taken into be seen by the doc. We were finally taken to the beds and various nurses came took bloods, ECG etc - I think they thought I was still drunk - and they were insisting it was a migraine. A doctor came and I said I want a CT she said it is a migraine I didn't need one. Again I had to do balance tests and once I got off the bed to walk the doctor told me to sit down as I was clearly not able to walk.

Mum and I were clear in what we wanted, a CT and the doctor came to see our way of thinking and said I would get a CT as she did not think it was a migraine I had. Finally someone listened to me.

I got more tests, x rays etc  - then after about 2 hours I was told I would need to stay overnight in hospital so was transferred to in between ward. Mum went home to get Dad and also to get me some PJ's etc. I was fed - hospital food is not great. 

Another doctor saw me and did more balance tests and told me it was a migraine and I did not need a CT and I would be discharged the next day. I was emotional at this stage and when Mum and Dad came back I told them this. We wanted a CT. 

I was transferred up to ward B1 were we went through the whole story again, answered questions and had more tests. Again I think they thought I was just drunk! Seriously!! And again they said I did not need a CT but the doctor would assess me in the morning.

Visiting time was over and parents went home and I tried to sleep - in a hospital this is difficult - please nurses be kinder to the patients.

A nightmare night!!

My last post saw me leaving work on Wednesday 19th December not knowing it would be my last day in the office, because that night my life began to change.

On Wednesday night my aunt did some physio on me as my arm was so sore and then I drove over to my friends house. Whilst at my friends house I went upstairs to her study to do something on her computer whilst she was downstairs watching TV with her husband. During my time on the computer my eyes started to go weird and when I tried to stand up I ended up lying on the study floor. I shouted for my friend but she did not hear me so I clumsily made my way down the stairs to her living room.

She was sitting in the living room with no lights on and when they said hi, I said 'I can't see' to which the reply was, 'turn the light on' and I said 'no I literally cannot see'. They brought me over to the see tee to sit down, made me toast and tea to see if that would help, but it didn't. The plan was for one of them to drive my car home but I said if I go home Mum and Dad will want to call the on call doctors so we decided to call them there and then.

That was a scary phone call. Whilst describing my symptoms to the doctor (blurred vision, balance bad, left hand side completely numb, left hand side of my face was dropping, bad headache, pain behind the back of my eyes, dizzy and feeling sick) she decided it was a stroke. I panicked at this because I was only 31 and my friend was saying no, its not a stroke, but she was thinking brain tumour but of course never said anything.

Mum and Dad were called to come get me and take me to the on call doctor. When they arrived I was distressed and they were distressed. Dad took my car and Mum and I went together. She has never driven as fast as she did that night! The on call doctor sent me to Antrim Area Hospital, so at 11.30ish we arrived at A&E. 

After seeing the triage nurse, she sent me straight through to the beds to wait and see the doctor. Bloods were done etc and we sat and waited, and we waited and we waited and at 4am the doctor came to see us. She made me do tests such as walk straight, put my finger to my nose etc... I could barely stand so these were hard for me to do. I think everyone thought I was just drunk - as if I would turn up drunk with my parents in tow! She told me it was a migraine and it would go away in a few days. I was hooked up to some drip and was told that would take an hour to go into my system. Mum and Dad went home and left me for a bit as it was late and Dad needed his bed. #

After an hour of the drip -  I was no better but the doctor decided I was ok to go home and reassured me it was a migraine and would go away in a few days. So I left hospital at 7am when mum came to get me.... still dizzy, balance not great, pain behind eyes, headache and blurred vision - I could not walk without support of my mum.  They just let me go home in that state. So off I went home to bed. 

Off to work I go....

I had been unemployed since the end of September and job hunting for the whole of October and November, and thought that this would be the case for December and even into the New Year. However, things were about to change - in the first week of December I got a phone call offering me a job in the Northern Health and Social Care Trust working as an Information Analyst  - it was a temporary agency job contracted until end of March, but it was a job - was going to get me back on the work saddle!

When I got the call I was with my friend and sister drinking coffee - they were excited but I cried, and was not sure why I was upset, should have been happy - I was scared but deep down my illness was working on me and I didn't realise.

I was due to start work on the 16th December, and did get excited by the time the date came around. 

For three weekends in a row, starting the end of November I was plagued by a excruciating headache and pain behind my left eye and it was terrible. This is how I was feeling on 14th December and 15th December it got worse and I began to get dizzy and my vision was blurred - I thought my vertigo was coming back. I was quite anxious as well because I was due to start work the next day.  I went to sleep wondering if I would be able to go in the morning. The job was in Ballymoney which is 35 mins drive from where I live outside Ballymena.

I woke up the next morning, 17th December still not great. Headache was not as bad though the pain was still there behind my eye and I was dizzy and feeling very queasy. My eyesight was still not great but even so I got into the car and drove to Ballymoney, sat in the office in front of the computer for seven hours and drove home again. This was also the case for Tuesday and Wednesday. 

Looking back on it all I wonder how I did those journeys in the car with vision a bit blurry - it  is not recommended I tell you. And my Dad said he shudders to think of me driving there down the Frosses road which is so busy with eyesight not great and being dizzy as well. 

When I left work that day I did not realise it would be my last day working in Causeway House, Ballymoney because I did not know what was round the corner that evening. 

October 2013 - the journey begins

So, you have had all the factual information to give you an idea what MS is and how it affects people, so now I am going to tell you my story.

How did my MS journey start?

Back in October 2013, I started to get pains in my left  arm, it was very painful and felt like sharp shooting pains and the sensation in my arm was not as strong as the sensation in my right arm. It felt very weird and the pain made it hard to drive and do other things.

I had no idea what it was - the pain came and went but was pretty much there 80% of the time. What was weird though was during that time I was getting some prayer ministry from a friend and every time she prayed for me the pain in my arm got really bad  - we were mystified by this. I don't think it was my friends prayers as she has prayed for me since and no extra pain came my way!

I was also getting sharp shooting pain down one of the nerves on the left hand side of my neck. At times it felt like someone stuck a knife in me and was twisting it around.

I was scheduled to travel to Peru in November to see my friends in Arequipa. Off I went on the planes, long long journey and included a 10 hour wait in JFK. During the plane ride, the pain was unbearable, but for the two weeks I was in Peru the pain was hardly noticeable, only really occurring during the night. Again on the journey back home the pain was back and continued when I landed in the emerald isle. My conclusion on this is that heat is good for pain!! Bad for me, since I live in a cold country! 

My friend advised me to go to the doctor since it was hurting too much (think she was fed up with me complaining!!) so I went to the doctor and was advised it was a trapped nerve in my neck (hence the shooting pain) and I had tennis elbow and golf elbow  as well (weird since don't play golf or tennis!!)

I was given pain relief in the form of Naproxen and referred to a physio (I was told this referral would take 3 weeks, but didn't actually get my appointment until 17th January, so it was really two months). 

Little did I know that these pains would then end up with me being diagnosed with MS. This wasn't the only symptom I was suffering from from October.  I also was very tired and spent most of the time in Peru sleeping, which made my Cuban hosts laugh, but I thought that was just the altitude and heat making me tired. 

My family and friends also pointed out that my moods were changing and I was feeling low, but again I put this down to other circumstances, such as being unemployed, attending so many interviews and getting rejections. So on my trip to the doctors this was also mentioned and I was put on happy pills!! 

The pain medication and happy pills helped, but the sensation in my arm was still weak and I also noticed that my grip wasn't great for my left hand. 

During this time I also complained to my friends and family that my memory was getting bad and I had trouble remembering things and also finding words when having conversations. They said not to worry as it happens to be best of us. But as a 31 year old, it worried me as I thought it was too young to lose my memory.  

Right that's enough for this post which has covered October to November so next post will be start in December 2013. 

MS Symptoms (5) Vision

Vision

A problem with vision is one of the most common symptoms of MS, and often one of the first people notice. The symptoms can include blurred vision, double vision (diplopia), optic neuritis, involuntary rapid eye movement and occasionally, a total loss of sight.

Why does MS cause visual problems?

Problems with vision can result from damage to the optic nerve or from an in-coordination in the eye muscles. The optic nerve connects the eye to the brain. Inflammation or demyelination in the optic nerve causes optic neuritis, which is experienced as a temporary loss or disturbance in vision and possibly pain behind the affected eye.

Typically, vision returns partially or fully within a few weeks. While it is quite rare for a person with MS to become totally blind, it is not at all uncommon for an individual to have recurrent episodes of optic neuritis over the course of the disease, usually in one eye at a time. Damage to the optic nerve can result in a blurring of vision, which may or may not totally resolve over time. Colour vision requires a great many nerve fibres from the eye for accurate transmission and is particularly susceptible to changes from demyelination.

Optic neuritis can cause a large, noticeable "blind spot" in the centre of the visual field, and the person experiences a visual image with a dark, blank area in the middle. This is called a central scotoma and is not correctable with either eyeglasses or medication, although steroids may be helpful in the early, acute phase.

Diplopia (double vision), the experience of seeing two of everything, is caused by weakening or incoordination of eye muscles. This symptom is typically treated with a short course of steroids. Patching one eye while trying to drive or read will stop the double image; however, permanent patching of the eye will slow the brain's remarkable ability to accommodate to the weakness and produce a single image in spite of the weakened muscles.

Upon examination, the physician may detect a rhythmic jerkiness or bounce in one or both eyes. This relatively common visual finding in MS is nystagmus. Nystagmus does not always cause symptoms of which the person is aware. 

MS Symptoms (4) Pain

Pain

Pain is a common symptom in MS and it effects daily actives such as work, play, mood and enjoyment of life.

Why does pain occur in MS and what are the common types?

Steady and achy types of pain in MS may be a result of muscles become fatigued and stretched when they are used to compensate for muscles that have been weakened by MS.  The pain I have experienced has been a mixture of stabbing, throbbing and burning pain. Sometimes it feels like someone has got a knife, plunged in it to the back of my neck and twisting it around.

This pain comes from faulty nerve signals emanating from the nerves due to MS lesions in the brain and spinal cord.

The most common pain syndromes experienced by people with MS include:

• headache (seen more in MS than the general population)
• continuous burning pain in the extremities
• back pain
• painful tonic spasms (a cramping, pulling pain)

Experts usually describe pain caused by MS as either musculoskeletal pain, paroxysmal pain or chronic neurogenic pain.

Musculoskeletal pain can be due to muscular weakness, spasticity and imbalance. It is most often seen in the hips, legs and arms and particularly when muscles, tendons and ligaments remain immobile foursome time.

Back pain may occur due to improper seating or incorrect posture while walking. So remember to walk straight as if an angel has got you by a string on top of the head and when sitting, do not slouch. Anyone who knows me has the right to tell me off if I walk or sit slouched, one of my friends already does – good friend.

Contractures associated with weakness and spasticity can be painful. Muscular spasms or cramps (called flexor spasms) can be severe and discomfiting. Leg spasms, for example, often occur during sleep – this is one symptom I get and its very annoying as it often disturbs my sleep – probably a good job I am single and sleep alone otherwise my husband might be battered and bruised!!

Paroxysmal pains are seen in 5-10% of people with MS. The most characteristic is the facial pain of trigeminal neuralgia, which usually responds to carbamazepine. Lhermittes sign is a stabbing, electric-shock-like sensation running from the back of the head down thespian brought on by bending the neck forward. Medication is of little use because this pain is instantaneous and brief.

Neurogenic pain is the most common and distressing of the pain syndromes in MS. This pain is described as constant, boring, burning or tingling intensely. It often occurs in the legs.  Paraesthesia types include pins and needles, tingling, shivering, burning pains, feelings of pressure, and areas of skin with heightened sensitivity to touch. Thepains associated with these can be aching, throbbing, stabbing, shooting, gnawing, tingling, tightness and numbness. Dysesthesia types include burning, aching or girdling around the body. These are neurologic in origin and are sometimes treated with antidepressants.

Optic Neuritis (ON) is a common first symptom of MS. Pain commonly occurs or is made worse with eye movement. The pain with ON usually resolves in 7-10 days – I disagree with this has for me it last nearly a month.

MS is often called the invisible illness because most of the symptoms are unseen by others and pain is one of these. I walk around in pain most of the time, but people can’t see this - and then others try to tell me they know how I feel – but really no one else knows what other people’s pain feels like.  Everyone’s pain is unique to them and pain cannot be compared. 

MS Symptoms (3) Fatigue

Fatigue

Fatigue in MS is not just an ordinary tiredness, like you might get at the end of a hard day's work. It can be described as a feeling of mental or physical exhaustion.  And one of the annoying things is that despite how much you sleep, you wake up feeling as tired as you did when you went to sleep.

It is also described as an overwhelming sense of tiredness with no obvious cause, you may feel extremely tired after very little activity, your limbs might feel heavy, and it becomes harder to grasp things or to write. And other symptoms might get worse alongside the fatigue, like like difficulties with balance, vision or concentration.

Fatigue affects people in different ways, and it may change from week to week, day to day, or hour to hour.

All kinds of activities can be affected by fatigue: from going to work, to going to the pub, cooking a meal or playing with your children. Balancing these activities can become a daily issue when you have got limited reserves of energy. 

Because it is hidden, people with MS may find that those around them don't understand fatigue and its impact.

Why does fatigue occur in MS?

The cause of fatigue in MS remains unknown. However, the likely causes are a structural abnormality in the brain caused by demyelination and axonal loss, a product of the immune activity in the brain itself, problems of hormone production from the pituitary gland in the brain, or due to problems with control of the heart or chemical changes in the muscles.

Diagnosis

How exactly is MS diagnosed?

MS is complex and can cause many different symptoms, so it's not easy to diagnose. It's hard to pinpoint exactly when MS begins, and the early signs and symptoms are different for everyone.

It is not uncommon for a diagnosis to take several months, and frustratingly it can take even longer. 

However, I was very lucky, (not sure that is the correct word, but hey!!) and I was diagnosed within a month of taking ill. However, the doctor did say at time of diagnosis, it’s possible I have been living with MS since 2006/2007 without even knowing.

At time of diagnosis, a range of other possible causes need to be explored and many different tests need to be carried out.

What are the tests for MS?

• Neurological examination
• MRI Scanning
• Evoked Potentionals
• Lumbar Puncture
• Other tests

Neurological examination

You will be asked lots of questions about past symptoms and problems, and also family history as well, which in the medical world is known as ‘history taking’. This helps the doctor get a better picture of you and can help identify any other problems that may explain current symptoms.

A physical examination can also be carried out, which checks for changes or weaknesses in your eye movements, leg or hand coordination, balance, sensation, speech of reflexes. Whilst a neurologist may strongly suspect MS at this stage, a diagnosis won't be given until other test results confirm MS.

Magnetic Resonsance Imaging (MRI)

An MRI scanner uses a strong magnetic field to create a detailed image of your brain and spinal cord. It is very accurate and can pinpoint the exact location and size of any damage or scarring (lesions). MRI scans confirm a diagnosis in over 90 per cent of people with MS.

There is nothing much positive about an MRI, but when your friends question you, jokingly, of not having a brain, after an MRI you can tell them, well I have proof I have a brain, where is yours?!!

Evoked potentials

This involves testing the time it takes for your brain to receive messages by placing small electrodes on your head to monitor your brain waves responding to what you see or hear. If myelin damage has occurred, messages to and from your brain will be slower.

Lumbar puncture

This is sometimes called a spinal tap. It involves a needle being inserted into the space around your spinal cord, under local anaesthetic. A small sample of the fluid that flows around the brain and spinal cord, called cerebrospinal fluid, is then taken and tested for abnormalities. People with MS often have antibodies in this fluid.

People commonly report headaches following a lumbar puncture. The medical staff should advise you on how to manage this. Newer, smaller needles cause less discomfort, although they’re not yet being widely used.

Lumbar punctures are not being done much any more in diagnosis of MS.

Other tests

To rule out conditions that are similar to MS, other tests may also be done. These may include blood tests to reveal certain antibodies, and inner ear tests to check your balance.

MS Symptoms (2) - Bladder and Bowel

Bladder and Bowel Problems

These are symptoms that not everyone wants to talk about, however bladder and bowel problems occur commonly in MS, and can range form mild incontinence to constipation.

1. Bladder problems include the need to pass water frequently and/or urgently,incomplete emptying or emptying at inappropriate times.
2. Bowel problems include constipation and, infrequently, loss of bowel control.

Why does MS affect the bladder?

When MS damages myelin in the central nervous system, messages between the brain and the section of the spinal cord that controls the bladder can be interrupted, resulting in bladder problems. 

The most common bladder problems are:

• urgency (the feeling of having to empty the bladder immediately)
• frequency (an increase in the number of times urination occurs)
• nocturia (frequent urination during the night)
• incontinence (the inability to hold urine in the bladder)
• hesitancy (difficulty in beginning to urinate)
• Treating and managing bladder problems

Bowel Problems

Constipation is the most common bowel symptom in MS. A bowel management programme includes dietary manipulation (such as increasing fibrecontent), increasing fluid intake (which may create difficulty for those with bladder problems), and ensuring a regular and sufficient time for bowel movements. Varying combinations of fibre, stool softeners and peristaltic stimulants are usually needed.

MS Symptoms (1) - Movement, Memory and Emotions

What are the symptoms of MS?

MS is a complex illness and there are many symptoms  - not every person gets every symptoms and its unusual for someone to have all the symptoms (I am one of the rare ones). The symptoms depend on which areas of the central nervous system have been affected e.g where the lesions are on the brain. 

The symptoms vary from time to time and change in severity and duration, even in the same person.

The most common MS symptoms are fatigue, pain, bladder, bowel, movement, weakness and balance problems, visual and sensation problems, cognition and mood changes, but any neurological symptom or sign may be part of a person's MS.

While some MS symptoms are immediately obvious, others such as fatigue, altered sensation, memory and concentration problems are often hidden symptoms. These can be difficult to describe to others and sometimes family and carers do not understand the effects these have on the person with MS and on employment, social activities and quality of life. It is an invisible illness.

Movement/Balance

One of the things my neurologist said to be when I was diagnosed, "you can do any job but I don't advise tight rope walking" - this is due to balance, unstable walking and being dizzy (vertigo). There goes my dream job!!

It is thought that movement problems are caused by myelin damage in the cerebellum and its connections, which impairs the workings of the network, causing uncoordinated movements. A loss of balance and vertigo has been found to be due to lesions in the complex pathways that coordinate visual, spatial and other input to the brain needed to produce and maintain body equilibrium.

Other symptoms which affect movement and balance are:

• tremor
• clumsiness of a limb
• lack of coordination
• muscle weakness
• tightness, stiffness or 'pull' of muscles (spasticity)
• involuntary muscle spasms

Cognitive Problems

Cognition refers to the“higher” brain functions such as memory and reasoning. About half of all people with MS will not experience any cognitive changes, but for others, the most commonly affected aspects of cognition are:

• Memory
• Attention and concentration
• Word-finding
• Speed of information processing
• Abstract reasoning and problem solving
• Visual spatial abilities
• Executive functions

Because MS can affect any part of the brain, almost any cognitive function can be impaired, and symptoms can range from having a mild impact on only one or two aspects through to more pervasive changes, which affect a person's daily life.

Cognitive changes can have a significant impact on a person's ability to work and fulfill family responsibilities. Family members and friends may not realise that MS can cause cognitive problems and this misunderstanding can result in anger and confusion.

Emotional

Having cognitive problems is distressful and can cause stress and anxiety which on top of having to deal with the diagnosis, illness and changes to life brings on emotional responses. 

Being diagnosed with any serious illness can be likened to a death as you go through the grieving process – grieving for life before MS and self-image. This takes a while, its not an overnight experience, as you have cope with MS and incorporate it into your existing life.

Other emotional changes that may occur in MS include clinical depression,bipolar disorder and mood swings. All of these are more common among people with MS than in the general population. Depression and bipolar disorder require professional attention and the use of effective treatments.

Emotional liability appears to be more common, and possibly more severe,in people with MS and includes frequent changes in mood from happy to sad to angry, for example. It is believed that the causes are both the extra stress brought on by MS as well as neurological changes at work. Uncontrollable laughing and crying is a disorder affecting a small proportion of people with MS, and is thought to be caused by MS-related changes in the brain.

Different types of MS

As I have previously mentioned, I have Relapsing Remitting MS (RRMS) as did the two TV characters I mentioned as well, Dr Richard McCaig from Casualty and President Bartlett from West Wing. However, unfortunately this is not the only type of MS, there are four other types:

• Primary Progressive MS (PPMS)
• Secondary Progressive (SPMS)
• Progressive Relapsing (PRMS)
• Benign MS 

The course of MS is unpredictable and every individual will experience a different combination of symptoms. Again it’s important to remember that no two individuals with MS are the same in symptoms and the way their individual bodies deal with the illness.

Another important thing it to remember, never to compare yourself with others or let other people compare you with their friends/family who have MS.  Because while others may be severely debilitated, others may feel and seem health for many years following diagnosis.

Relapsing-remitting MS

In RRMS, there are unpredictable exacerbations or attacks (relapses) during which new symptoms appear or existing symptoms become more severe. This can last for varying periods (days or months) and there is partial or total recovery (remission). The disease maybe inactive for months or years. About 85% of people are initially diagnosed with relapsing-remitting MS.

Primary progressive MS

Approximately 10% of individuals are diagnosed with this form of MS, which is characterised by a lack of distinct attacks, but with slow onset and steadily worsening symptoms. There is an accumulation of disability which may level off at some point or continue over months and years.

Secondary Progressive MS

For most individuals who initially have relapsing-remitting MS, there is the development of progressive disability later in the course of the disease often with superimposed relapses and no definite periods of remission.

Progressive relapsing MS

This is the least common subtype (approximately 5%). Individuals show a steady neurologic decline with a clear superimposition of attacks. There may or may not be some form of recovery following these relapses, but the disease continues to progress without remissions.

Benign MS

Some people live with MS for many years without accumulating disability. This group has so-called benign MS. It is the mildest form of MS that is clinically apparent. People with benign MS have a minimal amount of physical disability after ten years or more of the disease. Early identification of benign MS is important in deciding who should or should not take lifelong disease-modifying treatments.

However, benign MS cannot be diagnosed at the onset of the disease but only becomes clear over time. Moreover, long-term follow-up has found that many people with benign MS do go on to develop progressive disease, and therefore labelling someone as having benign MS too early in the disease course may be misleading.

Quick MS Facts

Here are some quick facts of MS to help sum it all up for you:

• MS is a progressive disease of the nervous system, for which there is no cure.
• More than 2,000,000 people in the world have MS.
• More women than men have MS, with a ratio of 2 men to 3 women affected.
• MS is the most common diseases of the central nervous system in young adults.
• There are four main types of MS: benign, relapsing remitting, secondary progressive and primary progressive.
• Sclerosis means scars, these are the plaques or lesions in the brain and spinal cord.
• In MS, the protective myelin covering of the nerve fibres in the central nervous system is damaged.
• Inflammation and ultimate loss of myelin causes disruption to nerve transmission and affects many functions of the body.
• While the exact cause of MS is not known, much is known about its effect on immune system function which may be the ultimate cause of the disease.
• MS is not directly hereditary, although genetic susceptibility plays a part in its development.
• MS is not contagious.
• Diagnosis of MS is generally between 20 and 40 years of age, although onset may be earlier.
• MS is rarely diagnosed under 12 and over 55 years of age.
• There are a wide range of symptoms. Fatigue is one of the most common.
• The incidence of MS increases in countries further from the equator.
• There is no drug that can cure MS, but treatments are now available which can modify the course of the disease.
• Many of the symptoms of MS can be successfully managed and treated

So what is MS?

I have written about people with MS, what MS stands for, but have not said exactly what the illness is which I aim to do here.

Multiple sclerosis (MS) is a condition of the central nervous system. In MS, the coating around the nerve fibres, which is called myelin is damaged, which causes a range of symptoms.

What is Myelin?

Myelin is a fatty material that insulates the nerves, acting much like the covering of an electric wire. It allows a nerve to transmit its impulses rapidly, and is essential for the proper functioning of the nervous system. 

In MS, your immune system, which normally helps to fight off infections, mistakes myelin for a foreign body and attacks it. This damages the myelin and strips it off the nerve fibres, either partially or completely, leaving scars known as lesions or plaques. In MS these scars appear at different times and in different areas of the brain and spinal cord. The term multiple sclerosis literally means, many scars.

This damage disrupts messages travelling along nerve fibres -they can slow down, become distorted, or not get through at all.

As well as myelin loss, there can also sometimes be damage to the actual nerve fibres. It is this nerve damage that causes the increase in disability that can occur over time. 

The below image shows that happens when the myelin is damaged. This is called demyelination

Why More Special?

I have named this blog More Special, and am sure you are wondering why, what has that got to do with MS?

As you know MS stands for Multiple Sclerosis, but having read tweets, blogs etc I have come across a few other names for the chronic illness using the initials MS, given by people who have been diagnosed with the illness. Examples are:

MonSter - because it is a monster which comes in to try and take over your life

More Sh!t - because it is a very annoying painful illness to have

More Scars: due to scars being left on the brain due to the myelin being attacked, the term multiple sclerosis literally means, many scars.

But to me those are negative ways of looking at the illness, and I have been challenged to look to the positive side of life more, so have renamed MS - More Special... not that am saying I am more special than anyone else, as I am not, it just helps me cope with life and MS better.

However this is what I and am sure all with MS really want the initials MS to stand for:

TV Portrayal - President Josiah Bartlett

The second character whom I referred to in my first blog, has to be one of the best TV characters ever and  even though fictional has probably been the best US President ever and his name is Josiah 'Jed' Bartlett from the US TV show The West Wing.

President Bartlett suffered from relapsing remitting MS.

In the case of Casualty's Dr Richard McCaig we saw his MS from the start, we  saw him getting diagnosed and followed his process of dealing with diagnosis etc.

However, in the case of the Jed Bartlett, no one knew he had MS, well actually 10 people knew he had MS. - his wife, the Vice President and others but not his chief of staff, Leo McGarry, who was angry when he found out.

Jed was President of the United States but never disclosed his medical condition to the world - if this happened to Barack Obama or the next President, do you think they should disclose this information - the legislation says we are not obliged to tell our employers, but is this different if you are in power?

Why not disclose it and what happened when it finally got out and how did it get out?

In the episode 'He Shall from Time to Time" Jed was found unconscious in the oval office, and it emerges that he has the flu but that the flu has triggered an MS relapse.  This is the when Leo finds out about the presidents secret. As Season 1 progressed, Jed told his staff one by one and everyone reacted differently. It is interesting seeing how people react when you tell them you have MS.

Eventually the public found out about the President having MS and not disclosing this during the presidential race. There was a congressional investigation   - it was not the fact that the President had MS which was the problem, it was the fact he lied and covered up information  - if he covered this up, what else may be cover up in regards to running the country.

Why did the President not want to disclose the fact he had MS  - well because he thought that he would not be voted in as President if people knew - they might have thought he was not up to running the country with a chronic illness... but he was able to - this is the important thing - having MS does not stop people doing what they want, it may limit us from time to time but we need to be bigger than MS and keep doing life.

I am finding my way to doing this, only having been diagnosed seven months, I am still on the journey to acceptance.

This clip shows President Bartlett, in his bed after an MS attack, talking to his Chief of Staff Leo McGarry.

TV Portrayal - Dr Richard McCaig

In the previous page I mentioned all I knew about MS, was what I had seen on TV. Two of my favourite TV characters had MS and both dealt with it in different ways, because as they say, everyone is different, no two are the same.

First there was Dr Richard McCaig from  Casualty portrayed by Gray O'Brien. How did he find out? First of all his eye sight started to go weird, then pain in the leg started him limping and he was tired all the time. He did not want to be a doctor and a patient and wanted to ignore he was ill. However, he had to seek help and was eventually diagnosed with MS - relapsing remitting.

On this diagnosis, Gray said "It's amazing how little people know about the condition. There seems to be a general lack of information about the disease, and we have a duty as a TV drama to be very faithful to the symptoms experience by sufferers"

I don't know how well it was portrayed as in 1997/1998 when this was being televised, I had no idea of MS except what Casualty was telling me.  The one thing to point out is that Richard did not end up in a wheelchair, because despite what a lot of people think, not every MS sufferer ends up in a wheelchair.

After diagnosis, Richard continued working because as work discrimination meant he was safe and he could not be fired because he had a disability, but is this true of everywhere? I am beginning to see flaws in that law.

Why this blog?

 Why this blog? Well on January 14th 2014 I was diagnosed with Relapsing Remitting Multiple Sclerosis -  a n neurological condition which affects around 100,000 people in the UK. 

In relapsing remitting MS people have direct attacks of symptoms which then fade away either partially of completely.

I knew nothing about this disease except from what I saw on TV but here I was aged 31 newly diagnosed and having to get my head around the questions which am sure others newly diagnosed have - questions like, 

• What is MS?
• What causes MS?
• How will MS effect my life?
• Can I still work?
• Will my symptoms disappear?
• How do you know when you are having a relapse?

I remember walking out of the Neurologists office scared, confused and even relieved. Relieved that I now knew why my vision was double, why I kept dropping things, why I was so tired all the time etc.

I felt alone, yes I had friends and family but I did not have anyone who understand the illness, its like you get diagnosed and then left to fend for yourself. So I am writing this blog to share my experiences, thoughts etc and hope it helps others newly diagnosed..