Today is World MS Awareness day and I thought today was as good a day as any to broach the subject on here.
I have mentioned before that I have Multiple Sclerosis, it’s a neurological condition that affects the central nervous system (the brain and spinal cord). It can affect anything controlled by them (anything from vision to coordination to bladder and bowel control) and tends to worsen whenever it feels like making it very unpredictable and extremely frustrating. Many people that I have spoken to over the years have dubbed it ‘The Monster’ and I agree with the
As far as I know my MS started in 2008, possibly instigated through stress as I was having my life made a living hell by my mentor of the time. I went into work and fell over on the floor when I turned round to speak to someone, my balance had gone completely, constantly nauseated and every time I moved the world span! The GP I saw at the time told me it was an ear infection, a long shot as I had no temperature and it lasted for around 2 months but who was I to argue at the time?
Everything calmed down when I got back to my training and changed mentors, stressful still but manageable, everything health wise eased off and I thought no more of it until 9 months later. I woke up one morning and my vision was affected, it looked as though there was a layer of fog over the bottom half of my vision and the fun really began! Off I went to the hospital, A&E doctor said it was a migraine. I knew he was wrong but again who was I to argue when he could see nothing wrong with my eyes, GP next and again he could see nothing wrong so off to the optician. Again he could see nothing wrong, my cornea was fine as far as he could see and my mind started to whirl. I had trained as a neuroscientist and could see in my minds eye the optic pathways, I knew which areas of my vision were affected and could pin point where along that pathway was affected…it was my optic nerve not my eye and I knew that really I needed to see a neurologist but also that that would be hard to get.
So….back to the GP and I began to feel a little like a tennis ball losing faith in my GP by the minute. He finally sent me to the Opthalmologist and she was fabulous, ran every test she could think of and though she told me there was definitely something wrong with my vision, she couldn’t see the cause. She made a note on my forms to say she thought I needed to see a neurologist (finally someone thought the same as me!) and sent me back to the GP. He ignored her recommendation completely! I told him I knew that she had recommended it, that I was not a run of the mill patient that knew nothing and I wanted to see one as soon as possible. He finally caved and told me that it would be ‘better to wait a few weeks’ bullpoo! I had something affecting my brain that was making me lose my vision, he was not going to make me wait! Not when even if he put the referral in that day it would take up to 3 months to see anyone.
At the time I had disposable income, I was earning enough money to contemplate going private for something this serious and told him so. He looked at me with an almost sneer on his face and told me that if that was what I wanted that he would write the referral for me though I don’t think he thought I would actually do it. Tough, I did, I researched a private hospital I knew that worked along side the NHS, it had 3 possible Neurologists that I could see and rang the next day to make an appointment. I was in to see one of them within a couple of days and diagnosed with Optical Neuritis (ON), told I needed an MRI scan as soon as possible and that as he worked for the NHS too he would put me back with them for the scan as I didn’t have insurance.
From that point it was like falling down the rabbit hole, I had a scan the next week and saw him again a couple of days later to confirm the diagnosis of ON and a few more days later I was on a day ward having my veins pumped full of Intravenous Steroids where I first heard them mention they were treating me as if I had MS.
My mind went into over-drive, out came my old text books, notes, I trawled the internet for information and felt my world slipping from underneath me. The only ray of light was the nurse doing my steroids telling me that although ON is a good indication of MS it’s not that black and white, that he had seen plenty of people with it who had never ended up with an MS diagnosis and he hoped I wouldn’t ever see him again (in the nicest possible way of course lol).
My hopes were dashed by my neurologist, I never actually said to him that I had figured it out and it took 2 appointments and another set of neurological symptoms this time in my legs a month later, for him to tell me as I kept bursting into tears and I don’t think he had the heart to say it out loud. When he did, it felt like a huge weight had been lifted, the tension of waiting to find out had been worse than knowing and I told him so. He sent me for a lumbar puncture and transferred me to an MS specialist saying that the results weren’t typical enough for him to say one way or another, though I think to this day he just couldn’t cope with the crying.
The new Neurologist was brilliant and still is. When I saw him I was having another bout of ON and he put me straight onto a Disease Modifying Drug, sending an MS nurse out to my house to help me choose the one that would suit me best and getting it rolling as soon as possible. I was injecting Rebif 3 times a week within a month of seeing him for the first time and for the first time in months felt like I was taking positive steps. It didn’t stop the depression that had set in by this point, or the fact that I was out of a job due to everything that had happened and my anxiety that now spiralled out of control leading to me moving back in with my parents. But it was the first positive step I had taken in regards to my MS and I’m very glad that I did it.
There may be no cure as yet but my injections make sure that I can live a pretty normal life, I struggle but I cope most of the time with more pills a month than I ever thought I would take in a year and an ever present hope that at some point soon a cure will actually come to fruition. Until then, I plod along as everyone with MS does, one day at a time.