Quote:
Originally Posted by entropy23
Hi Alice MD,
Although I do not have MG I relate to the lack of compassion and misunderstanding of symtoms and their effects that many of us living with various neuromuscular disease are met with. I have been trying to get a solid dx for a number of years and have been met with various levels of contempt, abuse and negligence, if the face of 5 EMG's postive for myotonia and a muscle biopsy that showed moderate atrophy - not to mention my progressing weakness, numbness and illness over a 6 year period...
but I went to a 2nd neurologist and he was dismissive and told me he had great news I was fine the EMG's and biopsy did not matter
I just had Fibromyalgia, and that my hyperefexia and tremor, inbalence was just normal for a woman of my age..38...So I understand the feeling that it is just completely impossible to explain, one experience to someone who has deceided they know what is wrong with you.
It is hard to keep a sense of autonomy when one is so completely demeaned and given no options.
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I am sorry, I just saw your post now. All I can say is trust yourself and keep on searching for a physician that will be able to help.
It is sometimes very hard to keep your head above the water and think clearly, under those circumstances. Most patients will nicely fit into known boxes called "diagnoses", so many physicians just don't bother with those that don't. There are about 6000 different rare diseases, that affect very few people, are not well described in text-books and are mostly used for intriguing "multiple choice" questions in board-certification examinations.
most physicians are trained to concentrate on the "bread and butter" of their profession. are constantly told that "what's common is common" and gradually lose the curiosity to gather a deep and true understanding of their patient's symptoms. But, some are not. some see the patient not the disease, some want to truly find the way to help. and they do exist.