Ive made many friends through the internet via forums for which I am truly thankful for.
Through reading all the various threads on different forums it has become quite clear to me that the battle to get a diagnosis of Myasthenia Gravis is common throughout the world, regardless of the standard of medical care provided in the patients country.
Someone once posted on a forum that the average length of time it took a female to get a diagnosis of MG was 7-8 years! This diagnosis usually came after many visits to many “specialists” and usually involved some aspect of metal health involvement. As far too often patients are told that the illness “is all in their heads”. On the other hand the length of time it took male patients was 12 -24 months. So why are the men being taken more seriously than the other 51% of the worlds population? Have we really moved no further on than the 19th Century in our beliefs that a womans uterus is what is causing her “hysteria”?
Some of the personal stories on the forums make you want to weep. One patient has tested positive for ACHR and is still being told that they do not have MG. Other patients have reached the point of mechanical ventilation before the diagnosis is confirmed, despite telling their Dr’s, for years in some cases, that they are having problems breathing, swallowing or even moving. Others have been discharged from hospital unable to feed themselves or walk and have been told they are suffering from coversion disorder.I met another MG patient in person it had taken them several years to be diagnosed. They were initially diagnosed with anorexia as they had become dangerously thin. At no point did anyone examine why this patient couldn’t eat or swallow properly. It was far easier to write them off as suffering from anorexia, which meant in effect if they didn’t improve it was down to them, not that the Dr’s had misdiagnosed them. Some have been sectioned under the mental health act. This is a criminal way to treat people who are seriously ill. Yet it goes on unreported and ignored. These cases are from developed countries not the developing world. Yet we seem to be unable or unwilling to do anything about this.
Unfortunately it is women who are usually told that it is all in their head. What is more frightening is that the people that are telling them this do not have qualifications in the field of mental health, it is neurologists that are saying this. A lot of times when these patients see experts in mental health they are told that there is nothing mentally wrong with them.
When I was in hospital last year I met a woman who was in her 80’s and had just been diagnosed with MG. This woman was an extremely strong woman. She had lost two husbands one to cancer and her second husband who had MS she had nursed for 25 years. She was very old school and she believed and trusted in everything that her GP told her. She had been his patient for many years. Six years ago, she developed problems swallowing, smiling and could no longer whistle. Her GP told her that he believed she had suffered a small stroke. There were no further investigations done to prove that the diagnosis was correct it was accepted due to her age that this was the case. When she continued to deteriorate, which was very slowly it was again suggested that she had suffered another small stroke. By this point she could not eat solid foods and her voice was always slurred. Again no investigations took place. It took 6 years for her to deteriorate and collapse. When I met her she had been fed via a nasal gastric tube for around a month and had just recieved her diagnosis. She had been started on steroids and mestinon and was improving every day. She told me she felt as good as she did when she was in her thirties. By the end of her stay she was driving me nuts with her constant whistling! She whistled all the time as for 6 years she had been unable to.
I understand that the medical profession say that this is rare but rare doesn’t mean it doesn’t exist. Rare just means it doesn’t happen that often but it still happens. My concern is that MG isn’t actually as rare as the medical profession make it out to be. I think that there are many other people out there like me who are battling to get the correct diagnosis. Until we are officially diagnosed we do not end up in the statistics. Or how about the people that are never diagnosed and/ or are given an incorrect diagnosis? How many people out there are falling into this category?
My concern is its takes far too long for patients to be diagnosed or for this disease to even be considered. My mother used to just sit and type all my symptoms into a search engine and repeatedly it would come back with Myasthenia Gravis. If my mum who has no medical training can do this why can’t the Dr’s?