Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

My body going wrong is something I have become rather used to over the last four years. Each time something starts functioning abnormally I find myself less and less surprised. Over the Christmas period I lost my sight in my right eye, and had some issues with my left one too. After spending the majority of my time at the hospital for three weeks I was eventually prescribed Doxycyline for a Lyme Disease flare up. This treated the issue, and everything returned to normal. I was discharged and told they would keep an open door policy for me. Foolishly I presumed that I would not need this and promptly went back to living life.

On Saturday I visited my local opticians. I had noticed that my glasses were no longer helping with my sight, my right eye had begun to get painful and was not focusing properly. After repeating over and over again the eye exam, and consulting his colleagues, the optician asked me to come back today. This was so he could redo the test and in case a miracle happened and my sight improved over the weekend.

There is something rather unnerving about watching a professional get more concerned with each passing moment. At the end of today’s exam, he turned around and asked me who would see me sooner, Eye Casualty or my neurologist. This instantly had me on edge. In theory Eye Casualty will see me quicker, as my neuro is not due to see me until the 6th June. The poor man and his colleagues could not comprehend how I had managed to not notice the dramatic deterioration in my sight. I laughed in pure exasperation at this comment, trying to explain that my body functioning abnormally was something I was used to, so it had not struck me as something to worry about. So off they sent me with an urgent referral in hand.

Upon getting through to Eye Casualty the nurse asked if I had been seen by the John Radcliffe yet. I had no idea that I was being referred to them so queried it, only to have her respond with well because of your MRI results. Excuse me? I had been informed that my MRI was clear. This took her by surprise. She has decided to wait till five to try and speak to the consultant who saw me over the Christmas holidays.

So now I’m sat by the phone waiting for her to call back as she hopes to squeeze me in tomorrow. I’ve gone from being relaxed about it all to rather nervous.

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Comments on: "“How Did You Not Notice Your Eye Isn’t Working?”" (6)

  1. Good luck with the eye appointment: hopefully they will treat you with the right antibiotic straight away and your sight problems wil melt away quickly. Best wishes, Peter

  2. leejcaroll said:

    good thoughts Rebecca

  3. Good luck… Hang in there!

  4. Whatever happened with the eye issues? I hope they were able to resolve.

    • I’m waiting for my neurologist to make a decision on the 7th on whether to start me on high dose steroids and I have a scan on the 9th x

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