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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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08-06-2023, 06:33 PM
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This will take more than one post. Also given my increasingly troubled brain it’s best I can do. I think I will start with asking for ideas or resources on how people who are losing ability to talk communicate with doctors, medical folks. A big part of the problem for me is the frustrating assumption that I can always talk!! Thursday I had a call from the neurology department’s administrative head about my recent pleadings with patient advocate department for huge need for help from neurology! Recent months calls not even answered. I did 20 minutes of the high points after which she was gonna have my neuro call me. I need a GIANT frown face here. She also told me there Best Neuro who was my first, best doc left a year ago……. Retired the word of choice for doctors with hearts fleeing Iowa. My current doc there calling me won’t accomplish a darn thing. Sculptor 44. My eyes and brain are too compromised currently to do My Chart type medical apps to communicate. This is why a really great doc who reads bodies and is not judgemental is crucial now.
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08-07-2023, 10:52 PM
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Really rough day physically. I am having significantly worse Vision issues. End of day I called my Retired Internist office to get appointment with the doctor she said could take me in that office. So I was informed that due to shortages Internal medicine at the University has been told not to make appointments. Furthermore the doctor I wanted I could not see because she is Retiring next year. There’s that word again. But I persisted and said I am so sick and was told to see her. I begged for even one appointment. Thankfully She said I could leave a message on the nurse line. I am trying to find a Caregiver to take me to ER ASAP. And I have a Housing Voucher inspection sthis week. I know the inspector from past inspections.. I said we’re moving deck chairs on the Titanic so she is prepared the unexpected. Sculptor 44
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So much! Where to start?
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