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Who Heads Up YOUR Healthcare Team?
You may have answered the title question with, “my Primary Care physician”. That sounds good. After all, in most healthcare systems, your Primary Care doctor controls all your medical services within their system. You may need a referral from your Primary to get to a specialist.
As they say, “a picture is worth a thousand words”. Michael J. Fox says it all!
No one knows more about our health than we do. I would postulate that YOU and I are the ones who head up our Healthcare team! With LEMS this is especially true. Many physicians have never heard of LEMS. Even many neuromuscular neurologists may have never seen a LEMS patient in their practice. We know the symptoms better than anyone. We know what is working and not working for us. A great relationship with our doctors, them listening to us, and collaborating on treatments and tests, will go a long way on the road to better healthcare.
So when that question comes up again, let’s make it clear, YOU and I are the head of our healthcare teams. Be your own best patient advocate, to ensure you get the best out of your team!
Now, who’s in charge of your healthcare team?
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4 Replies
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UN NEURÓLOGO DE UN HOSPITAL, pero es cierto que vamos a la par. Los síntomas que yo tengo y el ajuste de la medicación para ver si me hace estar mejor o peor. Es un síndrome que tiene poquísima gente. Enfermedad muy muy rara y muchísimos médicos que no sean neurólos o neuromuscular ni siquiera han oido hablar de ello. Y más cuando te ven que a veces andas y otras veces te quedas rigída. Que la debilidad te hace perder el conocimiento y que cualquier esfuerzo te deja completamente deshecho. No se lo explican, por no hablar de la sensación de que no puedes respirar y disfagia, amén de que la musculatura va cediendo y las vértebras van estropeándose y cuando hace frio los calambres son tan fuertes que impiden el movimiento.
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A HOSPITAL NEUROLOGIST, but it is true that we go hand in hand. The symptoms that I have and the adjustment of the medication to see if it makes me feel better or worse. It is a syndrome that very few people have. Very very rare disease and many doctors who are not neurologists or neuromuscular have not even heard of it. And more when they see you that sometimes you walk and other times you stay rigid. That weakness makes you lose consciousness and that any effort leaves you completely undone. They don’t explain it, not to mention the feeling that you can’t breathe and dysphagia, in addition to the fact that the muscles are giving way and the vertebrae are deteriorating and when it’s cold the cramps are so strong that they prevent movement.
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Thank you for your observations. I agree the rarity of LEMS makes it more difficult for some doctors to understand and treat. Another reason to be very careful to find a good one who understands and works together with you, the patient.
Gracias por sus observaciones. Estoy de acuerdo en que la rareza de LEMS hace que sea más difícil de entender y tratar para algunos médicos. Otra razón para tener mucho cuidado de encontrar a alguien bueno que entienda y trabaje junto con usted, el paciente.
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Translation: A HOSPITAL NEUROLOGIST, but it is true that we go hand in hand. The symptoms that I have and the adjustment of the medication to see if it makes me feel better or worse. It is a syndrome that very few people have. Very very rare disease and many doctors who are not neurologists or neuromuscular have not even heard of it. And more when they see you that sometimes you walk and other times you stay rigid. That weakness makes you lose consciousness and that any effort leaves you completely undone. They don’t explain it, not to mention the feeling that you can’t breathe and dysphagia, in addition to the fact that the muscles are giving way and the vertebrae are deteriorating and when it’s cold the cramps are so strong that they prevent movement.
UN NEURÓLOGO DE UN HOSPITAL, pero es cierto que vamos a la par. Los síntomas que yo tengo y el ajuste de la medicación para ver si me hace estar mejor o peor. Es un síndrome que tiene poquísima gente. Enfermedad muy muy rara y muchísimos médicos que no sean neurólos o neuromuscular ni siquiera han oido hablar de ello. Y más cuando te ven que a veces andas y otras veces te quedas rigída. Que la debilidad te hace perder el conocimiento y que cualquier esfuerzo te deja completamente deshecho. No se lo explican, por no hablar de la sensación de que no puedes respirar y disfagia, amén de que la musculatura va cediendo y las vértebras van estropeándose y cuando hace frio los calambres son tan fuertes que impiden el movimiento.
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