Relapsing remitting MS

I received a formal diagnosis two days ago- because there is evidence of older lesions I was able to get this diagnosis. Pretty bummed about it but oh well- I wish I’d been told sooner but I think they made a judgement that i was too ‘fragile’. I’m a nurse for goodness sake… *rolls eyes* […]

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What’s new?

Hi all, Just thought I’d put an entry of my progress in. I have annual leave coming up and I’m super excited to be going back to California to see my boyfriend. Putting the whole clinically isolated syndrome thing behind me! (for now). I have been  getting episodes of extreme tiredness but I think that’s […]

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First line MS medication

UPDATE: So yesterday I had an appointment with the neurology consultant and now have an appointment on the 16th of May at an MS clinic and I have my MRI (spine) tomorrow at 15:45. The neurology consultant says although they cannot officially diagnose me with MS yet, he’s convinced I have MS from looking at […]

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My brain malfunction

Hi all,

I’ve decided to start writing a blog. My main reason for starting this is because I have had a tough couple of weeks…

Me: I am a newly qualified nurse working in a medical admissions unit. I am in a long-distance relationship with my boyfriend of two years. I was just accepted into a MSc in Advanced nursing practice at a top uni!! and I have just been diagnosed with Clinically Isolated Syndrome (which is related to the development of multiple sclerosis).

So, in this blog I hope to note my thoughts/ feelings/ research and changes I am making to my lifestyle in light of recent events.

I had been feeling a little overwhelmed and stressed in my new RN role . This is due to a multitude of factors: the patients I care for have a very diverse range of illnesses, I often care for people who are acutely ill, the patient turnover is very high and I work in the NHS. To give some insight, a few people have referred to working in MAU to start as ‘The baptism of fire’ (perhaps a little extreme). There are definitely things I could have done better in my first couple of months of working there in relation to my own health and well-being. I have realised that you are no use to anyone if you are overly tired/stressed/hungry. I often miss my breaks which is no good- I need breaks to do my job well. I can not skip meals or eat quick, crappy foods if I want to have adequate energy.

My Horrific week

Night-shift 1

I was actually excited to see that I had been allocated to my first set of night-shifts. In my student days I was always a bit of a night-owl and seemed to cope well with night-shift and with MAU being so busy throughout the day it would be a nice change to still be busy but not have the added stress of speaking to worried relatives. I could focus more on patient care.

My first night-shift went well. I was constantly kept on my toes but I had more time to thoroughly update patient notes and do my job well. I remember feeling a little bit off-balance but I put it down to tiredness and the fact that I had started a trial of contact lenses to correct my astigmatism. After handing over my patients in the morning I did notice the unsteadiness in my visual field- looking back, I almost felt drunk and a little muddled.

I phoned my mum as I walked to the train station at 8 in the morning. After a brief moment of small chat, I asked ‘It’s totally normal when you’re tired to have fuzzy vision right? Do you ever get that?’

I got the reassuring answer I was looking for. Must just be tiredness I assured myself as I looked over to my right crossing the road not being able to tell the precise location of the car driving past me. Deep down I think I knew something wasn’t right but I hoped I could sleep this episode off and carry-on as normal. It must be these new contact lenses, I’m definitely wearing my glasses tonight I thought.

Night-shift 2

Boarding the bus on the way to the hospital, I called my boyfriend. He is UK born but now on Californian time and has a background in neuroscience. I was becoming increasingly worried about my vision issues and wanted to get his thoughts. He, like me, had a suspicion it may be my new lenses as that was the common denominator of things that had changed before I started having problems. I’m so thankful for his support. He pushed me to make it strongly known to the shift coordinator and nurse in charge that I was having double vision.

I did this and was asked if I thought I would be able to work the shift. I said I would be able to work the shift ( in hindsight I shouldn’t have). Luckily I was given extra support from a very competent student nurse who put herself forward (thanks!). My thinking was muddled, balance/coordination was off, my eyesight deteriorating and something that felt like it could develop into a full blown migraine. By goodness I was glad when I’d finished handover. Feeling a little sorry for myself, I mentioned to the nurse I was handing over to that the night-shift had been fine but it had been a struggle to concentrate as I had bad double vision. I think she was trying to be positive and reassuring when she confided in me that sometimes she gets double vision too. I think I knew what she meant but I knew this was different.

Getting changed out of my uniform, I looked in the mirror and the sight made me cry. I could look into the mirror with my right eye and see that my left eye was not in it’s rightful place. Instead it was facing outwards, I had some control though- I could make it wobble back a bit. At this point I was a wreck- walking to the train station, I phoned mum in floods of tears. I had to get to my optician. Fast forward a few hours and a coffee and chocolate cake later (optician opened at 10am). I was triage’d by an optical assistant who I’m almost certain I overheard describe my eyes as ‘really weird’ to the optician. I’m not one to be easily offended and I’m sure she didn’t mean it as such but it made me feel like more of a spectacle than a person with a serious eye issue.

The optician was great- he assessed me straight away and quickly referred me to the Eye Pavilion (specialist eye hospital). I had an appointment for half one that day. I was assessed at the eye pavilion by an orthoptist and given tape for my left glasses lens. I was then seen by the ophthalmologist who was an absolute god send through out this entire journey! After having another two eye specialists inspect my eyes, they concurred that the best plan from there was to have an MRI scan.

The ophthalmologist kept in close contact with me and was absolutely excellent. She referred me to neurology and was in close contact with the team there. I received a phone-call from her when the report of my MRI had been confirmed. My MRI has shown areas of demylination in my brain. This is what I understand from this: This means that the ‘insulation’ effectively for the wiring in my brain has broken down in some areas due to an autoimmune response. The body can rebuild myelin (just not as strong as before) and there is a 1 in 5 chance that it will never happen again. If an episode happens again and new lesions appear that is when it becomes multiple sclerosis.

I was shocked to find myself so relieved at having a name for what I was experiencing. Clinically Isolated Syndrome. It was a huge weight off my shoulders in just knowing more about what was going on. I have been out of sorts and after having taken steroids (methylprednisolone), my vision has improved. My balance still seems off and my thinking is rather slow and muddled compared to normal (unsure how much is psychosomatic). I have another neurology appointment soon and I’m taking it easy at the moment but hopefully will be back at work soon!

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