THE LAST OF WHAT'S PAST

This is the day of the consultation and I sit quietly, thinking, on the journey and in the waiting area. I left the Nintendo at home but made sure I had enough music on my phone to distract me without being too repetitive. Was this a good idea? Not if you are as inquisitive and chatty as me! I would rather chat to the other patients in the waiting area. It is true what they say – there is always someone worse off than you, people who cant use their legs at all and all sort of viruses I discovered later were around.


The Neurologist came and introduced himself and shook my hand saying he wouldn't be long, I felt to make sure I hadn't accidentally left my crown or tiara on.

I was weighed, which proved my scales were correct, and blood pressure taken. I have lost just over a stone in the past year and dropped 4 dress sizes in 18 months without trying not that I'm complaining, I needed to lose it plus some more.

Then came the consultation which consisted of thousands of questions about my health and various tests as before, The only problem was my brain – it was on holiday, a situation common in MS and so excused by the doc, I did explain that it is normal for me.

A student was sat in on the consult and the doc was fascinated by my eye movements the student said I was a perfect example of something but I cant remember what! I am sure it wasn't an insult though.

I had to try and balance on each leg – failed that! I had to walk in a straight line – failed that! Finally after loads moire questions that luckily mostly needed Yes/No answers I was told that I had been misdiagnosed regarding my Fibromyalgia and it was definitely MS.

I didn't know until then that there are different types – these are the two main categories

Secondary Progressive MS
Most people with relapsing remitting MS eventually develop ‘secondary progressive’ MS – around 65 per cent have developed it after 15 years.

Secondary progressive MS, as the name suggests, sees a progressive increase in people’s symptoms, but this progression can be very slow. Changes might be so slight that they are hard to notice for a long time.

Primary Progressive MS

Primary progressive MS affects about 10 to 15 per cent of people diagnosed with MS. It is called this because from the first (primary) symptoms it is progressive. Symptoms gradually get worse over time, rather than appearing as sudden attacks (relapses).
To get a definitive answer I would need further tests of a different sort, and so started my life as a pincushion.

A blood test straight away was needle number 1 and a urine test to make sure I had no infection so I could be given steroids to make me feel better, apparently any future 'relapses' would be treated in hospital with intravenous steroids but, because there was no definitive type yet I was given steroid tablets.

The MS nurses were introduced to me and took me to their office in order to answer any questions I may have but, as anyone who knows me will tell you, information has to rattle round inside my head for a while before it finds a way out of my mouth. Again I was told that was normal with MS, and the MS Nurse would be doing a follow up visit at my home in about 10 days time.

School was now at the beginning of term, lessons in MS were on the curriculum and it looks like it is going to be a long term,

THE END OF DISCOVERY AND THE BEGINNING OF LEARNING

Well now I knew the Neurosurgeon's educated opinion and the words were out there in the ether. Once said words can never be unsaid all that can be achieved is clarification. People, trying to be helpful, such as my other half, pointed out that until I had seen the Neurologist nothing was definite. [That was true so ALAN WHY DID YOU TELL PEOPLE???] I didn't tell anyone except close family and friends, excluding my Mother, after all when they said it wasn't that would mean fewer people to have to explain to.

I became an avid letterbox watcher, anticipating a letter from the hospital, After 3 weeks I rang the hospital as the Neurosurgeon had suggested to see how much longer my 'urgent' appointment would be. I was getting anxious because every time I sneezed or coughed I had, and still have, a searing pain in one of my temples and so taking a lot of paracetamol, a fact that I was uncomfortable with.
No appointment was forthcoming and, frankly, the admin staff at the hospital was less then helpful. I told my GP and the reaction I got was more worrying than hearing nothing. I was told that I DID need an urgent appointment because I needed to start treatment as soon as possible but that still did not make me realise the seriousness of the illness, I needed the consultation to for my own peace of mind. Peace of Mind??! More like Piece of Mind or Mind in Pieces.
Eventually the follow up appointment with the Neurosurgeon arrived, 4 months after the consultation where I had first been told MS. The Neurosurgeon was not best pleased that I hadn't heard anything and even before I entered his consulting rooms he wanted to know why. I must say I enjoyed watching the admin staff wriggle out of that, eventually the reason given was that the Neurosurgeon had not 'ticked' the correct box. Looking back I didn't realise just how many different departments would be involved and therefore it was reasonable that the Neurology Department need a definite referral i.e. the correct boxes ticked before they begin to notify the other departments,
Eventually the appointment day with the Neurologist arrived – it had only taken 4.1/2 months instead of the 3 weeks originally indicated. I was relieved that at last I would have an answer. Little did I realise how much and how dramatically my life would change.
My next posting will pick up at that point and begin telling you about the process of my learning.