My Symptoms

I am going to explain some of my symptoms before I got diagnosed with my illness. I will try and make it simple and in chronological order as I remember it.. and admittedly most this post may come across as a bit of downer.. but I hope it does come in use somehow! AND PLEASE bare in mind the illness I have is very rare so if you do have any of these symptoms at all please don't panic and think you have what I have because its very unlikely!

My first symptoms started around end of July 2014. My left shoulder began to feel sore as though I had pulled or torn a muscle around my shoulder blade. The pain only lasted about 3 days and was intermittent. A few Paracetamol's sorted the pain out so I wasn't worried about it at all at this point.

Around mid August 2014 I started experiencing nerve pain and this was the horrible part. I had numbness on parts of my skin on my left arm and across my shoulder blade. Pins and needles in my hand and pain underneath my arm. The pain underneath my left arm felt like an intense burning sensation (similar to a sunburn) This was also on and off but the pain was pretty dreadful so there were a couple of trips to A&E.. they sent me home with painkillers and advised me to get a referral for an MRI through my GP which was arranged for October.

End of August/Start of September 2014.
I was very fortunate to be taken on an incredible holiday to Florida with my dad, brothers and my lovely Nanny. The holiday was brilliant. Only let down by the shoulder pain!! The 8 hour journey sitting on a plane upright was hell (the pain was better when laying down or standing up) I was hoping swimming would ease the muscles or release whatever nerve was trapped causing me the pain.. unfortunately it didn't happen! By the end of the holiday the nerve pain had spread to both shoulders.

October 5th (my birthday!) I was still experiencing the pain in both shoulders, however by the evening the burning sensation had come back and was so intense it caused me to have a severe panic attack the paramedics had to be called over (slightly embarrassing I must admit ha). The lovely paramedic helped calm me down and thankfully the pain had eased by that point.

October 19th - MRI Scan on my left shoulder was done. A week later the results came back and they only found Bursitis (inflammation of the bursa sack) on my left shoulder, the doctor recommended painkillers and physiotherapy (my first session wouldn't be until 24th December by the way!) As Bursitis tends to go down on it's own after a few weeks.

By end of October a friend noticed one of my pupils was noticibly larger than the other. This rang alarm bells as this could potentially be a sign of brain damage or stroke. I immediately contacted my GP and he called me in the next day to examine my eyes. Thankfully because the pupil DID still react to light which was the main thing and I was not experiencing any other serious symptoms it wasn't a major cause of concern I was referred to Moorfield's eye hospital start of December.

Mid November 2014 (around the 15th) was when I first experienced numbness from the abdomen down to the end of my toes. I could still walk but there was a strange sensation all over my skin which strangely reacted to different temperatures and touch. Over the next few days it began to affect my walking and whilst at work I noticed I was struggling to walk up and down the stairs. My legs started to weaken and the soreness across my shoulders was becoming unbearable.

26th November 2014. My ability to walk had decreased rapidly by this point and without physical support I could not walk even a few steps and had to use a wheelchair. I was admitted into Darenth Valley A&E where they immediately transferred me to the CDU (clinical decisions unit) and arranged an emergency MRI on my head and spine and CT scan of my whole body.

So there we are.. they were the symptoms I experienced. Admittedly I was completely terrified but I was also extremely relieved that this was finally being investigated. I am extremely fortunate that I was admitted at that point because I still had strength in my legs and only the sensory nerves had been affected. The doctors and I am still hopeful about my mobility returning to normal over time.

Only 2 1/2 weeks since my spinal operation and I have progressed from taking a few steps with  support and needing help eating, washing and getting dressed to being able to do all these things again by myself with very little assistance. I am gaining more independence back everyday and I am extremely thankful to the Surgeons, Doctors and Nurses at Kings College Hospital for saving my mobility and doing it with such care and sensitively.