Hi Everyone, like many others on this site I've had to take my health problems into my own hands. My problems started 2 years ago in May 2006. I was fine and suddenly I collapsed, I tried to get up again and once again fell. Once I regained my balance I found everything was still off and I was very unsteady. I had 3-4 episodes like that the following week, except this time I was incredibly weak and lightheaded. After the initial episode I went to see my GP who diagnosed me with labrynthitis and told me it would go away in two weeks. This did not happen, the episodes continued happening for the next two months before things got worse. In September 2006, it was noted that I was not able to stand still, I had to either continuously move or grab onto something. From this I was referred to a neurologist who did numerous tests (MRI, EMG, LP) all coming back negative, although I got a post LP headache which landed me in hospital for 10 days. While I was in hospital, another neurologist came on the scene and thought my symptoms were pointing towards an inner ear disorder.
A visit to a neuro-otologist also came up with no results. I had a CT and ENG all coming back negative except an old inner-ear injury was evident. He also referred me for physiotherapy for an inner-ear problem and although I regained some of my balance skills there were still movements I could not do (such as stand still without falling). I've since been to a balance clinic who have also determined that my balance centre is intact and that something else might be causing the problem.
In November 2007, another strange symptom occurred, I suddenly couldn't keep my eyes open. The first time this occurred I had been grocery shopping and felt as though my body was going to sleep even though I was mentally alert. Once I got home I rested for a bit and recovered. This happened once or twice a month until February when it started happening 3-4 times a week, sometimes lasting for 26 hours. On one of the occasions I went to the ER to see if there was anything they could do, they did an ice pack test which brought so much relief, the doctor suspected it was Myasthenia Gravis and I was sent to a neuromuscular specialist who did a single-fibre EMG and ruled it out. Currently, I have changed my lifestyle to try and prevent the 26 hour episodes of not being able to open my eyes; however, I now have to sleep (or rest) for 15 hours a day. This doesn't seem like the greatest alternative. Does anyone have any ideas what this might be?
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