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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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02-26-2022, 11:59 AM
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So this will be my job for the coming months, finding a way to keep my Mestinon. This drug is more of a life line than ever!! I went online this morn to update what I know about my neurologist here at home. So two things. She will take Mestinon away at end of 3 months given she is already distorting symptoms and the facts on me to fit her needs not mine. 2nd my local original pulmonologist is the only local doc that may be able to get her to at least give me more time. I estimate 6 months to at least get to Mayo neuro and his team so I can get prescriptions thru him. My youngest daughter does this. Where my neurologist is denied she has Epilepsy and sent off cold turkey off seizure meds. She was seen by top Seizure doc at Mayo who diagnosed her unique Seizure issue and does her meds. 3 years ago my Cardiologist said I do not have cardiac issues I have severe Myasthenia Gravis that needs bigger treatment!! But she said you need a better neurologist at Mayo. Sculptor 44
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02-27-2022, 11:17 PM
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Talked to my daughter today and she is firm in not believing my neurologist would drop my Mestinon in 3 months. She said it would be cruel and awful. She said she needs a direct statement from her nurse or her. She said she wanted a letter but I told her why that is A very bad idea. I have 2 other doctors there that are more Senior including my pulmonologist.. I am going to call my new helper tomorrow to discuss situation. I will try to meet with her soon to see if she has some ideas. I recalled in 2008 I lost my job. Because they weren’t willing to consider being more creative and consider my quality of life. They just patted me on my back when I was to be discharged and said oh well you don’t need to work. And no I am not wealthy so that really was weird. I have lost so many things over the years because of their ‘so what’ attitude. Sculptor 44
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03-13-2022, 06:52 PM
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Bit of strange news. My pharmacist talked to Neurology under guise of how difficult it is now to get Mestinon consistently. She ended up getting a new prescription for a full year !! Without big questions she fixed things assuring my Mestinon. One problem down several more to go. I am much in need of Sun to go out in to get strength up. I am pretty run down. But grateful for the warmer week this coming week. Sculptor 44
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| "Thanks for this!" says: | Lara (03-15-2022) |
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Doctor taking away Mestinon!!
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