My 15 year old daughter was diagnosed with MG 2018 and it was not easy, I still find it difficult to except it. She's still young and need to leave her teenage life. She even suffers alot when she is on her menstrual cycle. But now that she is in a disability school she is doing well.
Getting a diagnosis is a challenge. After several neurologists saying there was nothing wrong with me, it's all in my head... my GP finally trialed me on the mestinon. Instant game changer. I have my life back. I still can't dance or go on intense hikes, but I can still work and garden and don't have that fear not being able to breath. I am still considered undiagnosed after 6 yrs but as long as the medicine keeps working, I don't care at this point.
Amen sister!!! I pressed my local neuro to try mestinon as have all the symptoms getting worse over the 5 yrs , the second day my eyes focused, I could take a deep breath, wasn't terrified to eat, had a couple min of strength before the med level fell like a stone. His rationale was he practices evidence based medicine and I didn't have antibodies. MG is a rare disease and being sero neg is REALLY rare so that couldn't be me. ??????? 7th neuro ordered LPR4 which sadly was negative as well but in the mean time have been on mestinon and keeping a log of life. falls decreased, walking distance increased, pulmonary function improved 10% in 6 mos and was able to come off night time oxygen, bipap monitoring is positive, lost 24 pounds and can read clearly now. I demanded this IS evidence and in absence of other disease process responding to mestinon you have to call it MG. Because I live in a sort of backward medical area, vital to have a diagnosis as they treat the problem list not the presenting symptoms. smh
Love you, Aimee! Thanks so much for bringing awareness to Myasthenia Gravis and sharing some of your own experience with the long, slow road to LRP4 and seronegative MG diagnosis! ❄️💪❤️
My 15 year old daughter was diagnosed with MG 2018 and it was not easy, I still find it difficult to except it. She's still young and need to leave her teenage life. She even suffers alot when she is on her menstrual cycle. But now that she is in a disability school she is doing well.
Getting a diagnosis is a challenge. After several neurologists saying there was nothing wrong with me, it's all in my head... my GP finally trialed me on the mestinon. Instant game changer. I have my life back. I still can't dance or go on intense hikes, but I can still work and garden and don't have that fear not being able to breath. I am still considered undiagnosed after 6 yrs but as long as the medicine keeps working, I don't care at this point.
Amen sister!!! I pressed my local neuro to try mestinon as have all the symptoms getting worse over the 5 yrs , the second day my eyes focused, I could take a deep breath, wasn't terrified to eat, had a couple min of strength before the med level fell like a stone. His rationale was he practices evidence based medicine and I didn't have antibodies. MG is a rare disease and being sero neg is REALLY rare so that couldn't be me. ??????? 7th neuro ordered LPR4 which sadly was negative as well but in the mean time have been on mestinon and keeping a log of life. falls decreased, walking distance increased, pulmonary function improved 10% in 6 mos and was able to come off night time oxygen, bipap monitoring is positive, lost 24 pounds and can read clearly now. I demanded this IS evidence and in absence of other disease process responding to mestinon you have to call it MG. Because I live in a sort of backward medical area, vital to have a diagnosis as they treat the problem list not the presenting symptoms. smh
Love you, Aimee! Thanks so much for bringing awareness to Myasthenia Gravis and sharing some of your own experience with the long, slow road to LRP4 and seronegative MG diagnosis! ❄️💪❤️
Thank you so much for your support!
I have MG. And I exercise calisthenics ❤❤❤
I am MG patient my problem 10 years