Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 09-28-2012, 06:30 AM #21
BackwardPawn BackwardPawn is offline
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University of Maryland has a doctor who specializes in MG and a really good surgeon who does thymectomies orthoscopically. Look at their mg webpage for info. Or pm me if you want her name.

Don't judge her based on my current condition as I was recently dx'd w/ SPS which is much rarer and harder to treat.
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"Thanks for this!" says:
StephC (09-28-2012)

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Old 10-07-2021, 12:35 AM #22
Sculptor44 Sculptor44 is offline
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Great full to find this discussion I found. It was sure what I needed as I consider what to do with My November appointment with a new neurologist at Mayo Rochester. I looked up his bio and all the work I have done since home to give them much better information on me. Dr Geurber who was. A new GP really pushed bad information. She basically used some of the Gaslighting the worst of which was that I didn’t need a pulmonologist. Now the Mayo neuro said my EMG indicated myopathy. He told me all or part of the biopsy info for my mitochondrial disease is missing. The New neuro seems very appropriate in his areas of strength. It’s as if someone actually picked him replacing the ones Ithat were mainly about sleep and oxygen. Someone that cared which I don’t have here at home. There is a medical paper that I found that says some folks need to be off MESTINON up to a week to get a MG result. I know what happens to me after 2 days tho that’s a few years back. I will never forget having 3 nurses and a very unhelpful lift device working so hard to get me up from a toilet of standard height. They absolutely didn’t want to believe I couldn’t pull myself up with my arms. More than anything I really need someone who does not gaslight me. Sculptor 44
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Old 10-07-2021, 12:41 AM #23
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My Covid brain is pretty bad so forgive my at times jumbled writing. Sculptor 44
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Old 10-10-2021, 10:55 AM #24
Jenmoore111 Jenmoore111 is offline
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Argh MG Doctors….I have often wondered if they have gotten the way they are because they are forced to see so many of us due to being so few of them or they really are researchers at heart and are forced by their major institutions where the majority of them work to see patients when they would be rather working in their labs and writing journal articles. Either way, for all their “greatness” and ability to figure stuff out, I have NEVER met a single one with compassion, humor, time, ability to listen, explain their thoughts in a way that makes sense to ME and MY case specifically or who answers a portal message! I have never left any of the visits without crying all the way home. And home is always a long way away. I have the very fortunate means to have been able to visit FIVE major MG specialist/centers, Yale (Nowak), Columbia (Hirano, once and then I. Lee), MGH/Harvard (Guidon), and Hopkins (Corse). I have been told from within minutes of sitting down I do not have MG. I have been told after many tests that I have seronegative MG - maybe? I have been told by 3 of the 5 doctors that I was the first patient they ever met to have seronegative MG but positive LRP-4 antibodies and all the symptoms of MG but also negative sfEMG! These are MG docs that see 100’s of patients a year! Can you imagine? I have been given Mestinon, I have been told to not take it, I have been told to take less, I have been told I wasn’t taking enough. The one thread that runs through all of it is, THEY JUST DON’T KNOW. I think the absolute best advice I got was from the last “best of the best” (lol). She said, you know, we just can’t keep up. The tests, the treatments, the knowledge that is being thrown at us doctors is coming so fast these days, we have no time to absorb it, test it out before another new one comes along, and it isn’t like there are 10’s of thousands of you MG patients, and you are all DIFFERENT and respond so differently to treatments. And the old stuff we do know is dangerous stuff, blunt tools, like doing surgery with plastic knives. So her only advice to me was “be patient” (no pun intended) eventually the medical providers knowledge will catch up and they will know how to yield their tools to my advantage.Hopefully, you will stay safe, and relatively functioning in the meantime. Really? REALLY??? Poor doctor? And I still cried all the way home….
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