At this present moment in time (June 2014) i am classed as being Secondary Progressive MS which is the 2nd of 3 stages. Because i have had a sustained build up of disability that means that the lines between me having a relapse and then going into remission are blurred even to the point where I can’t tell.


I have had many disease modifying drugs during my transit to this point. I started with  Betaferon in 2004 when that was deemed to have failed  i was then placed on Avonex. Well it was a little time later and that to was seen to have failed so they placed me on the 3rd and final Interferon injection and that was Rebif.


Well when that failed too I had deteriorated so much that it was at the stage of being desperate  for something to work so i was given approval to be given a 10 course treatmentof Chemotherapy. It really wasn’t pleasant and after the 7th course I was so ill and not seeing any improvement that I pulled myself off before the end!

 
So What is Multiple Sclerosis?
A Visual Demonstration of MS...
So How Does It Affect Me?
My Theory Behind Why It Failed

I served in the Gulf War and was given some drug injections that were supposed to protect us should Saddam deploy Chemical weapons but the drugs given were never licensed to be used and never tested/approved to be used together. To compound those issues even further the drugs were injected together with something called an Adjuvant. An Adjuvant is used to heighten the response of the drug injected in this case Anthrax.


Because there wasn’t enough vaccines of the Anthrax to go around all the troops  so what they did was to give a smaller dose and couple it with an Adjuvant.


SO...in my opinion (from all the research i have done re the Gulf War and the drugs given www.gulfdrugjustice.co.uk) I strongly believe that as Adjuvants are always active in a body once they are given then ...


WHEN anything is injected into my body the immune system is prepared because of the Adjuvant to take aggressive action so instead of my system accepting the Interferons as being good they are seen as bad and the immune system fights and rejects it hence why every disease modifying treatment i have been given has FAILED. Not only has it failed but my progression has been quite alarming.

So After 5 Years

I am about to embark on the next disease modifying treatment for which I got approval to start just the other day from my Neuro. Gilenya will be the treatment i will be taking but more importantly for me is that it ISN’T an injection!!


Its a one a day tablet so fingers crossed that it starts to reduce the progression and i can crack on with life.


My wife and me are coping and adjust our lives to how things are and its not too bad so if we can stay like this for a while then that certainly will be great!!

One Thing That Winds Me Up

You see all over the internet and Social Media people saying that they are ‘Fighting’ ‘Beating’ MS... NO NO NO - You simply cannot waste energy trying to Fight it but instead have to FULLY accept it and work ‘WITH’ it. I say i live ‘Alongside’ my MS and really do wish that I had seen comments like I can give from living with MS for 16 years in the very early years of being diagnosed.


My advice to people is to do ‘As Much As You Can Whilst You Can’ I would love no more than to walk down the street with my wife holding hands, to walk in the countryside, to feel sand beneath my toes walking on a beach on holiday, to be able to do DIY around the house etc etc


I have been very fortunate with my life traveling around the World experiencing lots of different things so i don’t have ANY regrets in the life I have lived but i do regret NOT doing more from the point of diagnosis. DON’T put things off any longer.. IF YOU CAN DO IT NOW THEN DO IT NOW!!!!!


What are you still doing reading this???


Have a great life  XX

The definition of the words Multiple Sclerosis means many or multiple scars (sclerosis). An incurable, long lasting disease that is in most cases very disabling. MS is a disease that affects the Central Nervous System: the brain, spinal cord and optic nerves. The disease is not in any way fataland those of us with MS are known to live long, productive lives and learn to live with their symptoms and limitations. What happens in MS? The Central Nervous System is made up of nerve cvells that send signals and messages to each other. Each of these nerves are covered in a protective coating solution called myelin. Myelin’s job is equivalent to the insulation of a electrical cord or wire. It allows signals to pass through the nerve cells at very high speeds. In MS, disease activity and damages are made to the myelin coating. This damage leads to a major breakdown and loss in the signal. The symptoms you experience, or witness, with MS are a result of this.