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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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12-11-2023, 11:20 PM
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Appreciate any links or ideas for how I can make it thru Really AWFUL Nights of fighting to breath, to Tolerate Severe Chest discomfort. I need more aggressive treatment and It’s not gonna happen soon. This is happening because my immune system is worst it’s been ever. And I have a Pulmonologist who believes me but I am so so sicker. Other docs like my GP are not supportive of MG and last ER trip had a young doc do so much damage I am in shock. And my arms are getting a lot weaker.. Sculptor 44
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12-17-2023, 04:05 PM
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The truth is where I live now in Assisted Living facility I am not getting the Support I need or that my daughter or I expected. I have been here a little more than a year and thought one doctor out of who I have would have heard me that this change would have challenges.. My daughter literally asked early last year before the move if my neurologist would help when we saw her. She quickly said No! Also another trurth is My main caregiver in family was my oldest daughter. About 10 days ago was first doc appointment she took me to in maybe a year. She is depressed and has given up on docs helping me in a meaningful way. I have had to go doctors in any normal way much and get Solumedrol when I hit bottom at ER.My ‘Bottom’s’ are getting deeper because I am not getting Elements of a care Routine I had before I came here. This is the worst my Chest has ever been. My Pulmonologist is trying to be flexible about getting me in. I had to confront my daughter about him needing to see me as he is my last local long term doctor now. But he will be limited by University Politics. Neurology has more Power than he does at this point. My daughter out of 2 I have is only one left at the giant Engineering firm here. She gets me groceries and manages my finances so she still does a lot. I used to go to doctors with Caregivers thru Medicaid. That mone is going into my facility and no they have no ability to get me to the doctor.I saw a Piece in Washington Post about Care Facilities and it included a Map of how much Care each state has. I checked for the date because I know Iowa does NOT offer level of oversight the Map suggests. Sculptor 44
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