A week had gone by with no improvement to my sight this was very unusual. I was feeling stressed by this point.

Why had things not improved?

 Would things ever improve?

What was happening? 

 I still hadn’t returned to work, although I had very little sight before, this sudden reduction had hit me hard and my confidence was shattered. I couldn’t even walk to the local shop alone. I was so nervous. I felt even more lost because my trusty guide dog Willow had only retired a few months earlier in November and so I was still trying to adapt to life again using a white cane as my mobility aid.

 It was at this time that my family, friends and even my manager at work were telling me that a trip to the GP is probably a good idea, as this length of time was unusual for my sight to be bad and not have returned to its previous level.

I would need a fit note to allow me to stay off work should I need to anyway, so I booked myself in to see the doctor.

Going to the doctor with a rare condition can be exhausting. On more than one occasion I have been the first person with NF1 that they have met, and they sure do  make it known. I have on more than one occasion been quizzed, or excitedly asked a million and one questions about NF1. I’ve had doctors ask if “a few students could just come and look at you” when I haven’t been in for anything at all related to NF1.  To say the least it can be frustrating. 

As well as general frustration, following a long and stressful medical history I find clinical environments incredibly stressful. I bit the bullet though and booked in to see the doctor. Thankfully he took me seriously, so seriously in fact, he booked me in for an MRI scan the same day. I do not like MRI scans, they are not very pleasant at all. But have had plenty of then so knew what to expect. In the past, where I have had MRIs I have panicked and had to pause and take a break from the scanner to calm down. 

I was lucky, the radiologists were so lovely and made the experience as tolerable as it could be. Following that I tried to put the whole thing out of my mind. I started to try to get out a little on my own, walking to the local shops, at first with my partner taking the route about 10 meters behind me, and then slowly doing it alone. It was about two weeks, and we got the results. The results were not what I was expecting at all. 

There was no change to the ONG, my optic nerves were very pale, although this is not surprising. But there was a new finding, an area at the back of my brain that showed bright signalling, the scan was to be repeated, this time with a contrast solution to see if that would determine more about what this was. 

This was scary and highly unexpected what on earth does this mean? 

Where do we go when we don’t know?

Google of course! 

Now it isn’t always helpful to use google to try to figure out what is wrong with you. After all, if you look in the right places a stubbed toe will end in immediate and agonising death.

If you know how though it can be helpful and give you the ability to get at least a little prepared for anything you may be told later down the line and you can even prepare questions should you want to.