Journey to diagnosis..

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At the request of many people who have asked, here is how I was diagnosed with Multiple Sclerosis:

‘I just wish I knew why I kept having my moments of feeling strange, it’s affecting everything I am trying to achieve or enjoy. It is turning me into a different person.’ (26 Aug 2011|11:18pm)

Taken from an online journal I used to write when I was younger. Back then, I couldn’t put into words how I was feeling; now I know it was because I was trying to battle an invisible illness.

I went to and from my GP on numerous occasions from 2008 onwards trying to explain how I was feeling, because I knew something was not right and I was desperate for help. They decided I was depressed, stressed, a student who drunk too much/didn’t sleep enough and that I was agoraphobic. I attended numerous counselling and CBT sessions, took different medication from diazepam to prozac with no positive outcomes or solutions. I got so angry that no-one was taking me seriously, but equally frustrated that I wasn’t able to explain the way I was feeling.

I remember being in my final year of University where I studied photography. I was trying to concentrate in a lecture but I couldn’t take in any information due to such severe brain fog. I got so upset and stressed out I walked out crying. As I’d been told it was due to stress, I didn’t think anything of it.

I used to work 12 hour shifts as a waitress in a hotel, so when I had spasms in my body, I put it down to not resting enough. It was only when I transferred to the reception team working regular hours, that I realised that I still felt just as awful and something was not right.

It was at that point, that I knew I needed to keep on asking for an answer in order for me to get the help I so desperately needed.

I booked an appointment with my local surgery who fitted me in on a same day appointment basis. I explained to the doctor everything that had been going on. How I was frightened to go to the big shopping centre nearby incase I fell over, how I couldn’t concentrate on anything and how fatigued I would be after just 1 hour of being at work. The doctor I saw was very stern and was obviously quite hacked off that the surgery had booked me in on a same day ’emergency appointment’. After being persistent with trying to explain my symptoms in any way I could, she eventually admitted that maybe she should send me off for further testing at the hospital.

I had blood tests, EEG and Evoked Potential studies, which all shed very little light on what was going on with my body. I then got put forward to have an MRI scan which I was petrified about. I wasn’t keen on enclosed spaces and my body did not like keeping still with random muscle spasms. Luckily the radiographer was lovely and could communicate with me through a microphone and headphones that they gave me before I entered the machine.

Whilst lying in the tube with what I can only describe as a space helmet on my head, I could see the radiographer in the mirror looking at the scans with a consultant. He then announced on his microphone that he wanted to inject me with intravenous dye, so that he could see my scans clearer. My heart sunk as I knew he had seen something on my brain scan that was not normal. As with all test results, I had the dreaded waiting game to deal with.

My consultant brought me back into clinic to discuss the findings. He showed me my brain scan which didn’t mean much to me (I didn’t know how it was meant to look in the first place apart from squiggly!). He said that he found it surprising as I did not present with usual symptoms of Multiple Sclerosis, but the scan result was typical of somebody with MS. ‘But you don’t have to worry about that as I don’t believe you have MS, it would completely turn your life upside down!’. Those words will stay with me forever.

In order for me to get this 100% confirmed, I had to go for a day session at the hospital to have a lumbar puncture test. My Mum and Step Dad came with me to make sure everything went smoothly. The procedure consists of a needle being inserted into your spinal chord and fluid is taken out for examination and testing. They will look for evidence of conditions that affect your brain or spinal chord with the fluid taken. I had mine done by the assistance of X Ray. For this procedure, you are asked to lay in the foetal position whilst they take the sample. Unluckily for me I was facing the X Ray screen, so seeing a needle enter my back was pretty scary. I didn’t experience any pain during the procedure, but afterwards I was extremely delicate and I wasn’t able to stand up for long periods of time without feeling dizzy and off balance. The headaches I experienced were also unbearable. I was signed off work for a week and ordered to stay as flat as I could, to prevent any fluid leaking from the area that was tested.

After one week of being signed off work, I was bored senseless but still not well enough to return to work. I rang my consultant to see if there was anything that I could do to speed up the recovery. My consultant said that he would write me another sick note as resting was the only thing to make it better, but he also wanted me to come to clinic as he had my lumbar puncture results back. That feeling returned, my heart sinking. I knew something wasn’t right.

My Mum and Stepdad were in New York, so I called my Aunt and Uncle to see if they would accompany me to the appointment which they were more than happy to do. Looking back, I was so happy to have them both there as I did not take in a single word of what was said. The whole day is a blur, but luckily they both paid attention to everything my consultant said and even called my Mum in America to tell her the news. I didn’t know what MS was, I didn’t know what that meant for me and I didn’t understand why my family were so upset.

Even though MS had been mentioned before, this was the last diagnosis I was expecting and the consultant wasn’t shy in hiding the fact that he, himself – was also not expecting that outcome.

The diagnosis stage made me feel very much in limbo, as I waited from around February until August until I was put forward for any kind of medication. I had so many questions, that I spent the majority of my time using the MS Society forums, googling words and phrases associated to MS; anything at all, to find out more information.

From there, I was put in touch with a specialist MS nurse who continues to support me whenever I need it. I also was sent to Disease Modifying Drug session to decide what medication I would start using as my first line treatment. I now have yearly check ups with my MS consultant, as well as 6 monthly phone and face to face consultations with my injection nurse.

So this was the beginning of my journey..the one that supposedly turned my life upside down. Yes it was a shock, but I am the same person I was the day before I had a name attached to my ‘strange’ feelings.

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2 thoughts on “Journey to diagnosis..

  1. Really interesting stuff thank you. As someone currently under investigation for various neurological symptoms it’s really reassuring to hear about other people’s similar experiences!

    Like

    1. Hello Peter,

      Thank you for taking the time to read my ramblings! 🙂

      I think it’s so important to keep in mind that no two people are the same when it comes to MS so although my blog isn’t the definition of every individuals MS, It can provide similarities which people can relate to.

      I hope you find the answers you are after and that you continue to read on with my story. If you ever need advice or support then do let me know and I’ll see how far I can help 🙂

      Rachel

      Like

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