3. The science bit …. because I’m worth it.

I didn’t know anything about MS at this point. What I did know was that it didn’t sound good. I certainly didn’t take it in and to be honest, 12 months later, I probably still haven’t.

A short time later I had to have a second scan at Hope Hospital. The appointment was sandwiched between me finishing work and having my hair done, both back in the city centre.  I arrived with little time to spare (as usual 😉 and found that the radiology department was at the opposite side of the hospital to the carpark, along corridors, upstairs, through doors, downstairs, along more corridors. I ‘ran’ as fast as one can in heels and arrived, hot and bothered, but just in time for my appointment. It was only then I saw the sign which said they were working with a delay of an hour on appointment times. A hour?! I only had 90 minutes to have the scan, drive back into town and make it to Toni and Guy. And I couldn’t miss it. After all my greys were coming through thick and fast.

As I sat there waiting I seriously considered leaving so that I could make my hair appointment. The scan seemed unimportant and inconvenient compared to my colour and cut, especially as I was going out the following night. I got more and more twitchy after I telephoned the salon and discovered that I was their last appointment. Looking back I’m glad that just as I had prioritised my hair over my health and decided to leave, my name was called and I had no choice but to have the scan. Incidentally, I made it to town in time to have my colour and had the cut two days later, so all was well in the end.

Following this I was referred to a specialist MS Consultant at Hope and a specialist MS nurse who explained what all this meant …

MS is an autoimmune condition affecting the nervous system. The immune system, as you probably know, usually fights infection and bad stuff – think Lucy Lui in Charlie’s Angels (cat suit, glossy hair, kick ass moves). MS basically means that my immune system is confused and mistakes the good guy coating on my nerves (called myelin) for the bad guys (like bacteria) and tries to fight it off kung fu style. Unsurprisingly the myelin does not like this and becomes upset and damaged which in turn disrupts the messages from my brain (I know it doesn’t take much as the best of times) in their travels through my nervous system.

The best example I was given is to think of the nervous systems as being like an electrical circuit with the brain and spinal cord being the plug sockets and the rest of the body being appliances plugged into it, like hair straighteners* for example. If the plastic coating on the wire to the plug on your hair straighteners becomes damaged, girls we all know they will become temperamental, emit sparks (as mine did once!) or give up working altogether. Well myelin is like the plastic coating and damage to it has the same effect on the nervous system – it becomes temperamental or emits sparks and in severe cases spontaneously combusts. (Ok the last bit was a joke)

*boys, please insert power drill or computer into this example.

It was this damage that caused the numbness in my leg, a physical symptom of de-mylination, which is referred to as a ‘clinical episode’.

In order to diagnose MS it is usual for the patient to have experienced two ‘clinical episodes’ which are defined as symptoms that have lasted for more than 24 hours. So, this could be bits going numb, difficulties with vision, speech, bladder – anything that is controlled by nerves which is pretty much everything that involves any sort of movement.

There are also different types of MS; ‘relapsing remitting’,’primary progressive’ and ‘secondary progressive’. Most people who are diagnosed initially have relapsing remitting. This is just as it sounds – flare ups or relapses followed by remission – so my leg went numb but then gradually got better. Relapses can, however, leave lasting damage like the ongoing problems I have with numbness and tingling in my leg – a result of the damage to my nerves caused by my kick ass, yet confused, Lucy Lui immune system.

Most people who start with relapsing remitting MS go on to develop secondary progressive. This is where symptoms do not go away completely after a relapse and there is a steady increase in disability.

Primary Progressive MS is the least common form and from the outset symptoms steadily worsen and disability increases.

From what I have been told I am currently in the ‘good’ category or things although that does not mean that this will always be the case.

My most recent scan in November revealed that I have 2 new areas of damage on the top of my brain, which showed up as paler grey smudges on the scan, although these have not shown themselves as physical symptoms yet. Despite me only having had one clinical episode I have been given a diagnosis due to the arrival of these new smudges.

This means that I am lucky and have been diagnosed at an early stage and it was recommended that I start treatment now for maximum benefit. Well, I say treatment – there isn’t a cure for MS – but rather drug that will armour plate my nervous system, toughen it up so that it is as hard as nails and prepare it for the next kung fu attack …

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8 thoughts on “3. The science bit …. because I’m worth it.

  1. Nicoletta, you write in such an easy to read way- loving the Lucy Lui analoges that make it so much easier for ‘ignorant’ (in the nicest possible way!!) people like me to understand… I already know far more about MS than I did yesterday. I have a friend whose sister was diagnosed about 5 years ago and although there are good times and bad, she leads such a mad and busy life it puts the rest of us to shame…

  2. Nic …. I have just read this following a link from Facebook and I now have tears rolling down my cheeks. Not because I pity you, I know you’d hate that. But because by writting all of this for others to share with you confirms something I have said since the day I met you. You are sooooo beautiful not just on the outside but on the inside too. You are talented and brave and kind and a massive inspiration to me. I’ve said it before and I now say it again, ‘if there were more Nicoletta Amatinos in the world, what a much nicer place it would be’. Thank you for being you and I love you very much xxxxx

  3. Nicoletta, I read this and I was in shock. I thought you had a trapped nerve, not a life changing condition! I also thought I knew what MS was but after reading your blog I now actually understand what it is and I realise that I knew very little about it. I wish you all the luck in the world. You are a very strong, glamorous, intelligent girl and I know you will kick MS’s ass Lucy Lui style xxx

  4. Just get that Leather catsuit dusted down and get your “black Belt ” in fighting MS
    Keep writing Glamour Puss – xx

  5. Mmmmm following on from Sam’s comment….”if there were a lot more nicoletta amatinos in the world…” hell there’d be a lot more criminals in jail but hang on….all the shoe shops would be empty!! There’d be none left for the rest of us 😉 Xx

  6. I know from reading this you are already in fighting mode-good for you and stick two fingers
    up to MS, Motor Neurone & other nasties.

    Kind regards-Gill Cusick

  7. Nicoletta, as Sam says, you are an inspiration to us all. What an education. I know people with the complaint but I never understood it until now. With an attitude like yours, life will never be dull.
    Hope you are coming out on the next night out. Karen does a fabulous job arranging these things.

    Mary Marsland

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