Scope community team
My life changed in 2013
2013 was the turn point in my life, up till then I was a Customer Service Manager, driving, walking and holding down a full time responsible job, but all changed when I received the diagnosis that I had MS, I subsequently had to retire due to ill health in October of that year.
It took 14 months of testing before I was finally diagnoses. I was told the reason it takes so long to get a final diagnosis is because the specialists need to rule out all other possible causes.
I suppose they have got a point… my consultant said that testing has come a long way in recent years, however some people that were told 10-20 years ago that they had MS; only to be retested and then told that they actually didn’t have MS at all but something else. So as you can imagine a huge legal battle started.
Anyway I had blood tests after blood tests, electrical brain simulation and eye reflect tests; where I was linked up to a computer, MRI scans with colour dye injected to check for legions (these tests found 3 legions in my brain!) I think the worst test was the spinal tap which is also know as a lumber puncher, they had to do that 4 times because they couldn't get the massive needle past my back bone. They decided to try again under X-ray; all this whilst I was awake and it hurt like crazy.
Oh yes I was going to tell you about another story that relates to how I was misdiagnosed many years ago. I was at work one day and all of a sudden I lost the peripheral vision in my right eye. It was quite a scary feeling because I could only see things that were directly in front of me, but I could not see anything at the sides. That sounds a little crazy but we often take for granted simple things and don’t actually realise how amazing the human body is until suddenly part of the mechanism fails. I went to the optician that same morning and she made an urgent appointment for me to visit a specialist eye hospital in London the next day. I spent another full day of testing and the next day was sent to my local hospital for yet another MRI scan. The consultant called me in to deliver the mind-blowing news… I had a brain tumour on my Pituitary Gland (this was later explain as lesions on my brain) He continued by saying “but that’s ok because he would be able to take the tumour out though my nose, so no major brain surgery”! I would be in hospital for a week but have to take 6 weeks off work.
The consultant called me in to have another MRI just to confirm the size, but surprise! Surprise the tumour had gone! But the effect were felt for some 5 years I couldn't get life insurance as there was no explanation as to where the brain tumour had gone. I was very confused and upset and received no apology from the consultant who had given me a completely inaccurate diagnosis… My life was turned upside-down from that day on. I had made the mistake of telling my family that the hospital thought that I had a brain tumour; but now I had to call back and tell them all that I did not have one at all.
I felt very stupid to have upset everyone about the diagnosis and felt like my family and work colleagues now thought I was a complete fraud. I decide from that day on to “suffer in silence” and not tell anyone anything and sadly that was when the communication between my family and I started to deteriorate, I was desperate for some comfort and support but felt that I could not tell them what I was going through until I got the facts right. I suppose I started to withdraw into myself, which made talking on the phone quite difficult especially as we were all so many miles apart.
My life carried on and I still had no answers to my questions… why was I always so tried even after getting 8-10 hours sleep a night? Every Saturday and Sunday I had to sleep for a couple of hours in the afternoon and if I ever had a day off work I slept most of the day. Even when we went on holiday I had to take a nap after a full day out-and-about just to recharge myself so that I could go out at night.
Another misdiagnoses meant I had an operation to repair a slipped disc in my back. Whether I had a slipped disc or not, I will never know but that also didn't solve the problem. After again visiting the doctor with more symptoms he finally sent me to a consultant Neurologist where I started the 14 months of testing.
Then the day came when I was given the diagnoses
Many times people have asked me how I felt and all I can say is... “my whole world came crushing down”. What the hell was going to happen to me? I left that consultants office in a complete trance, the world was just rushing passed me and it felt like I was watching my life though the window of a fast moving train heading straight towards a tunnel without an end, the light was rapidly going out and I had no control over any of it, my life as I had know it felt as though it had ended.
I know that sounds really dramatic but that's how I felt. I have never really spoken about these things before because I never really had anyone to talk to about it, and you just carry on until the time comes when like now when someone or something prompts you to get it out. I have found great comfort in putting this all down in writing, if it helps just one person going though this then I'm glad.
Getting back to my diagnoses, which incidentally took 14 months of tests to finally find out what i think I already knew. " I had M.S. When the consultant said, “I'm sorry to tell you but I can know confirm you have secondly progressive MS” my husband and I sat in silence for a few minutes and then I said, “ok thank you! But can we go back a few steps because I don't really want MS”.
At first it was the biggest shock although as I have already said... I kind of knew that something was really wrong; in some respects it was a bit of a relief to finally have an answer to the many unexplained questions I had about my ongoing health issues. It was kind of like saying, "See! I was not bull shitting - there really was something wrong with me all the time".