Hello
I am looking for some advice on chronic undiagnosed symptoms which I think may possibly be MG. In 2007 I got very bad muscle fatigue which made my legs feel heavy and made walking difficult. I was given a diagnosis of ME following a positive test for Epstein Barr virus. I had to stop working and gradually improved over 18 months although never fully regained by previous activity levels.
At the end of 2009 I got a virus with high fever and injured my lower back. I collapsed and all my limbs went very weak so I could not get up, I just kept on falling back down. My speech was very slurred and my balance and coordination was off. What followed was a series of what I can only describe as crisis in which my speech was so slurred I was not intelligible and breathing became very short and sporadic, as if I needed to remind myself on every breath. Three years on the crises have abated but the speech, balance/coordination and walking difficulties continue and seriously restrict my daily life.
I've had MRI brain/cerebral angiogram/lumbar puncture and visual evoked responses all fine, and bloods came back clear. I've had a thorough cardiovascular check up for blood pressure and heart rate all fine. More recently my GP has discovered I cannot sustain upward eye movement or rapid blinking (I just pass out in both instances). He did the antibody test but it came back negative.
I've lost my ability to drive since my head drops down unexpectedly and sometimes I can't support it at all. I get twitchy muscles that are driving me beserk and I can't stand up for more than a few minutes without collapsing. I find I can start things off okay but it wears down really quickly to a halt, and if I try to push it I just fall over, get up, fall over, get up, fall over....
I'm sorry for the long messages but I would really appreciate your advice and sometimes I feel like I'm going crazy because I don't have any explanation for what this is! I'm 30 year old female.
All the best and many thanks for reading x