My life will never be the same.
Hi my name is Kyrina. I am 28 and I am a chronic illness survivor!
In 2008 I first started to suffer pain and fatigue amongst other symptoms and in 2010 was diagnosed with EDS, Sjogrens Syndrome and Fibromyalgia. In 2012 I started to get worse, I noticed my legs would become weak when walking. I would trip over my feet and my limbs felt like dead weight. I also developed strange issues with my vision, things would look closer or further away, my vision would shake and I got double vision.
I saw a private rheumatologist who insisted I was just negative and needed to exercise! I also saw a neurologist who said it was depression and chronic fatigue syndrome. I would be so fatigued and weak I couldn’t get out of bed to look after my 5 year old.
I ended up needing a wheelchair and was pretty much house bound when I previously worked up to 30 hours a week. I had a social worker, occupational therapist, physiotherapist and support worker. Then in 2015 while on FaceTime with a friend, he pointed out that I looked as if I was having a stroke. I rushed to a mirror and he was right – my one eye looked like it was falling off my face and the other side of my mouth was droopy.
The next morning I made an appointment to see my doctor and was told it was Bells Palsy and given 50mg steroids a day to take for 10 days. A couple of days went by and I noticed the drooping wasn’t fixed and that it would come and go. I went on to good old Google and Myasthenia gravis fit so many symptoms I had suffered over the years.
I went to my GP who agreed it was not Bells Palsy and was given an urgent referral for a neurologist (this time I chose the neurologist as I know one that my sister used to see).
The neurologist did a few basic neurological examinations, ordered blood tests for Myasthenia gravis, but told me it was very unlikely and probably all just my fibromyalgia. He also ordered a very special MRI scan to look for calcium deposits as my sister has tuberous sclerosis.
I woke up one day and couldn’t see anything past arms length, it was just a huge blur of colour! I joined an MG Facebook group and the members were amazingly supportive!
I waited a few days before I saw anyone about my vision but when I did go to my optician, they couldn’t believe the results. I’d gone from perfect 20/20 vision all my life to loss of peripheral and my distance vision was so severe, I could register as blind!
I was sent to an A&E as my optician had no clue what it could be other than brain damage. They agreed Myasthenia gravis seemed the likely cause and since my neuro had ordered a special scan they wouldn’t do any further tests. So the wait began. Slowly over weeks my vision started to return but would fluctuate greatly as the day went on.
My blood test results came back negative for MG, but fortunately my neurologist agreed to try some Mestinon (an amazing medication if you have MG). My eyes opened instantly – I had never seen them so wide! I felt stronger and had more energy within minutes of my first dose. He also ordered nerve tests and a SFEMG was the key!!! I finally had an answer- I have seronegative generalised Myasthenia gravis.
Getting an answer is both a relief and horrible all in one, I screamed and cried and laughed in my car. My life will never be the same.
Since then I’ve slowly increased my dose of Mestinon, been put on steroids which were slowly increased to 40mg alternative days and I underwent a VATS (video assisted thorax optic) thymectomy operation (no thymoma).
My Myasthenia is far from stable, it effects me every day. My symptoms are limb weakness, speech, eyes, mouth, breathing, everything. I also lost my driving license due to my vision. But with the support of friends and everyone on the Facebook support groups, I get by. We are looking to start azathioprine and I hold onto the hope that my thymectomy will get me into remission.
Thank you for reading I hope it helps someone xx
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