My story actually starts some 15 years ago now, when I was about 30. I had just got married when my first symptom occurred. We had gone out for a walk one afternoon, and got a bit lost. After about an hour I started to drag my left foot, and then by the time we got back to where we were staying, I was dragging both feet.
After a sit down and a rest, everything was ok again.
This symptom kept occurring for the next eight years, and is still occurring today.
It was seven years after this episode started that the second symptom occurred. This one was far more complex. Following a discussion with my wife, who said that I was acting very depressed, I went to my GP who, in turn, referred me to a psychiatrist. It was this psychiatrist who felt there was something more to my predicament than just depression. It was after this that I began to realise just how the depression was affecting my work.
I subsequently got referred again, this time onto a neurologist, who started what turned out to be four years’ worth of investigations into my health problems!
It was following my first MRI that my neurologist gave me three possible illnesses that he would be looking into: Sarcoidosis, SLE or multiple sclerosis.
That afternoon I trawled through the internet, finding out about the three options that I had been given. After reading about the symptoms I was 90 per cent sure that I had MS.
Everything seemed to fit – it was like it had been written about me.
In the following months more referrals were made. Firstly onto a clinical neuro psychologist at the Wolfsen Neuro Re-Habilitation Centre, where my cognition was proved to be amiss, and then a second neuro psychologist at St George’s. A urologist at Roehampton had a say as well.
It took a long time to get a final diagnosis as to whether it was relapsing-remitting MS (RRMS) or primary progressive MS (PPMS), but finally it was confirmed as PPMS. After reading about PPMS I realised that my symptoms fitted like a glove, and with hindsight, that I don’t remit or relapse.
Getting the diagnosis left me feeling quite relieved. The doctor confirmed to me that I had PPMS, albeit a very rare form of PPMS: relapsing progressive MS. He said I was one of 10 per cent of people with PPMS to have this type.
Over the past six years, my life has changed BIG time. Firstly, I lost my health. My marriage broke down and I’m now divorced (that’s another big story). I lost my job because my employer did not understand MS (again, is another big story), and I also lost my brother to a brain tumour (yet again, that’s another big story).
I have always been very positive about my MS. In fact I love my MS; after all I have to live with it for the rest of my life. Yes, it’s a pain in the backside (not literally) but I have to make the best of everything. I want to help other people with any form of MS and I want to keep myself busy whilst accepting my limits.
I do not work anymore – I was a carpenter for all my working life. My balance and stability are shot, and now walking is becoming harder every week, but I manage. The fatigue gets to me every day and my short term memory has been blown to pieces, but thankfully my long term memory is fine.
I have recently seen an MS counsellor, who helped me answer questions that I did not realise even needed asking. She told me that my ‘emotional gate’ was closed, so it did not allow me to take or show any emotion. It has taken a few years to get my emotions back to how they used to be. But I do not think life will ever be the same.
I have also seen a physiotherapist and participated in a fatigue management course and a relaxation course. These have helped me no end, and I would recommend them to other people with MS.
I would also say to other people with MS, be as positive as you can about your MS and try and keep yourself as busy as you can. I find that it does help to take your mind off the numerous problems associated with the MS.
It is now with hindsight, and quite a lot of research, that I realise my MS has probably been with me since I was about 20, with nothing definite showing until I was about 38. I am now 46 and live with relapsing progressive MS (I have yet to get a true, actual meaning of this type of MS). I also live with Nystagmus, as brought on by my MS.
I would love to get more information on this type of MS – I have found out that it is quite rare, with only 5 per cent of the 10 per cent who live with primary progressive MS living with this type. It equates to there being 500 people in the UK living with relapsing progressive MS, so I am one of the 500. It makes me feel quite special now.
It is now summer 2014 and my condition has progressed, only very slowly though.
I am now 48 and not much has changed with my MS, although my walking seems to be a bit more tricky now, and the neuralgic pain that I get, mainly in my left leg, has increased. This is now being treated, quite successfully, with the medication 2x60mg’s of Duloxetine, that my consultant has put me on.
The other medications that have also put me on are 2700IU of Vitamin D3 and, most recently, in a month’s time I will be on 60mg of Simvastatin, only on 40mg at present, which is a Statin, and said to be beneficial to those who live with a progressive MS.
I just wish that I could get to see my consultant at least twice a year now, but I understand why it is only once yearly, with their work load, and my very slow progression of my MS.
All of my emotions are now back to where they were, and sometimes increased to what they were, which I think is brilliant.
I got re-married last year, with a very small but quite lovely ceremony at a Masonic lodge, a stone’s throw from Twickenham Rugby Stadium. We only went on honeymoon this year, but that was to the Dominican Republic, which was so nice.
The Nystagmus, which I live with also, is more prominent in my day to day life. This may be because I have been told that the Nystagmus is vertical as well as horizontal, with the later being the worst.
I now intend to live my life to the fullest, whilst taking my disability into account. This is what everyone who is, or may be, in the same club as me, should also strive for. It gives a good reason for living, even if it is only with a rare form of multiple sclerosis.