Which doctor is your primary doctor for your MG?
Who do you see for your care around your myasthenia gravis diagnosis?
Diagnosed in Dec 2023 and have been seen once in out patients was told I'd be seen again in 4 months time but it is now 14 months with out an appointment and have been told the nuro surgeon who diagnosed me has left ..and that the department is way behind with appointments . Since diagnosis my symptoms have Almost disappeared .. but I'm feeling very tired at the moment . I am in the UK and am feeling let down by the hospital services
Hey! Many of us find that hospitals offer little support after an MG diagnosis. However, I hope the following articles can be beneficial in helping you find a new doctor that specializes in MG: https://myasthenia-gravis.com/doctor, https://myasthenia-gravis.com/living/specialized-doctor-benefits, https://myasthenia-gravis.com/living/best-doctor-qualities, https://myasthenia-gravis.com/living/finding-doctor-specialists Because your symptoms are under control, you may have your symptoms stay that way to wait a month or so for an appointment, but the sooner, the safer, as the symptoms can be triggered without warning. MG has the potential to lead to a crisis, which can be very dangerous; stressing this when trying to make an appointment may help you get less of a wait. Here is a document of cautionary drugs that have the potential to worsen MG: https://nebula.wsimg.com/903ebe2c701eb4e72e3211dc9fb9064e?AccessKeyId=7F50FBE19A111D19DDAC&disposition=0&alloworigin=1
To start your search with finding an MG specialist, here are some possible offices in the UK treating MG: https://www.stgeorges.nhs.uk/service/neuro/neurology/neuromuscular-disorders/myasthenia-clinic/, https://www.manchesterneurosciences.com/departments/neurology/myasthenia-gravis, https://www.uhs.nhs.uk/departments/brain-spine-and-nerves/wessex-neurological-centre/neurology/neuromuscular-wermans/myasthenia-service, https://www.kch.nhs.uk/services/services-a-to-z/muscle-and-myasthenia/, https://londonneurologist.co.uk/myasthenia-gravis-specialist/#:~:text=Professor%20Michael%20Hanna%20is%20a,research%20of%20these%20complex%20conditions., https://drgirijasadalage.co.uk/
-Jodi, Team Member
I was diagnosed in 2016 I was referred to a neurologist who did blood work which came back positive for MG He started me on prendisone and folic acid and methotraxate which improved my eye sight and my eye went back to normal but since then I still feel lack of energy, increased anxiety and pain in my hands
I need to investigate symptoms to try and figure out what is from MG and what might be from MGHave you looked into trying or discussing any other MG treatments with your doctor? https://myasthenia-gravis.com/treatment. Do you know what common MG antibodies you tested positive for? Some treatments help with certain types of MG more than others, but every individual is unique. https://myasthenia-gravis.com/blood-tests
-Jodi, Team Member
Dr. Teresa Weber
Neurologist
