Think I got your letters round the wrong way !
It started dec 2014 with double vision watching TV in the evenings, by Feb this year it had gone to most of the day, every day, plus blurred vision at work. Saw optician March for glasses (I've always worn contacts ) but needed extra help. Optician said my eyes hadn't changed but I insisted I couldn't focus and mention the double vision. Panic set in and another optician chatted with the other and said they were referring me to the emergency eye clinic. 10 days later I got seen, they checked for tumour and diabetes and said its 6th nervy palsy and it's happened because of my age (I'm 48), I noticed the crashing fatigue getting worse as well as muscle fatigue, my legs and arms shake if I use them for support, just a general all over weakness. Eye clinic told me to go back to optician and have prisms fitted to glasses, optician arranged for this but disputed the diagnosis and wrote a series of tests to be done with GP, one was MS, I started to worry and wondered how much had I put down to menopause? He told me he's pretty sure I have a condition, and the sooner it's diagnosed the better. Then I started waking with a gritty eye and couldn't open it for about 20 mins each morning. Saw GP, she agreed with optician, did bloods and said she's doing urgent referral to neuro, in the meantime I had another clinic appt for ? Burning mouth syndrome and that consultant asked if I'd seen anyone about my eye (we had discussed the double vision) as he had noticed that there was an eyelid lag, it was slower and not closing fully, he said that's why I wake with the gritty feeling, he said to strengthen my case he's writing it on my notes. Saw neuro aug 14, he ran loads of muscle exhaustion tests and said limbs aren't weak enough at this stage to test but there's other tests to do that but the eye muscle tests failed miserably, and the only thing that can mean is myasthenia Gravis, he's arranged an MRI to rule out inflammation and lesions and started me on the myasthenia medication immediately. He sent me a copy of his letter to my GP saying he doesn't expect anything else apart from Myastenia. Already I have strange happenings where I can't smile, under my jaw muscles tighten and swallowing is more tiring, as is chewing. My arms and fingers tire very easily and feel like I'm working against them, and if I walk without resting it feels like wading through treacle. The muscle spasms have increased in my toes and feet in strength and pain but I think this could be down to the medication
Myasthenia typically does present with a droopy eye and I'm praying I'm being spared this, it's a tad lower than the other and can't close in certain eye movements. It's all been a shock and upsetting but it is what it is and I can't change anything, I don't think my family are quite understanding how bad this could get but maybe they do and aren't saying, nobody is treating me any different and that's a good thing. I've told my boss today, and told her I want to carry on as normal working my usual long hours but need to drop Wednesday's, by then I can hardly see the screen from my 2 days of long hours (I've just come home from 11hrs solid PC work
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Topic: Myasthenia Gravis (for CLKD) (Read 4564 times)