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Myasthenia Gravis: negligent care
hi there, I’m 32 and IV battling a condition Which has been suggested to be myasthenia Gravis (seronegative) for some time for at least 4 years. It renders me to have stroke like episodes muscle spasticity I loose functions like speech the ability to open my eyes and move but I can hear everything. But for the past year I have progressively developed breathing difficulties which worsen upon eating talking walking and etc. These symptoms improve with rest and medication but keep reoccurring. I may point out this has all come on very suddenly and has no known cause as yet I was literally sat on my sofa.
I develop stridor which becomes difficult to control I have just come out of hospital after nearly two weeks where the care I received was really poor. I received no neurology input as my neuro was based at another hospital and the neurologist was “not working” I was placed at risk twice during these episodes especially once in an mri scanner as I had severe stridor. I have left the hospital feeling traumatised and lesser of a person. I am chasing doctors to try and get the treatment I need and for them to scan my thymus as this hasn’t even been checked and I am exhibiting all symptoms. I am an intelligent caring kind person with a career a job a family a husband and this is ruining my life every day I am struggling with walking to talking and I fear that I am not being taken seriously and it is down to genuine post code lottery how can I speed things up and get people to take me seriously please. I have other conditions such as crohns and severe endo also and I take azathioprine mestinon and steroids and toprimate as I have tremors too .. I really am stressed with the whole situation and becoming desperate for some sort of advocation as my confidence in medical professionals is dwindeling. I can appreciate I have a rare condition but the sheer lack of compassion and the lies that get told are ridiculous and I just can’t take it any more. It’s simply not tolerable. I have a son whom is autistic too my family need me well I need to be well. I really need some help and guidance now especially as I feel quite vulnerable and unwell. ‘My instincts are telling me something is very very wrong the pain and pressure in my chest is not normal (iv had a lung function test my lungs are fine ) please help a girl out 😖
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