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


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Old 11-05-2021, 09:29 AM #1
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Default Sculptor44 ??

Hey, Sculptor44, Where are you? Are you OK? It's been a while since we've heard from you, so I'm getting concerned.
Please let us know how you're doing.
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Old 11-05-2021, 11:32 AM #2
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Hi Wren
I helped Sculptor with resetting her password today as she has been struggling to log in - so hopefully she will post again soon
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Old 12-27-2021, 03:40 PM #3
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Back at last!!!! Multiple issues had me away. My days are shorter so that is a factor. Have Pain Clinic tomorrow thankfully. I am way overdue as they could not get the usual steroid they inject. Talk more later. Sculptor44
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Old 01-11-2022, 12:22 AM #4
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Back to ER tomorrow thankfully. I so need a Solumedrol shot and IV fluids. I hope I can feel well enough to see Eye doctor. It has been way way too long. My last one wouldn’t give me new lenses until I had surgery for scar tissue in left eye from cataract surgery years ago. Myasthenia affects my eyes strongly so I enjoy the temporary improvement I get from Solumedrol. The neuro at Mayo Clinic was visited by phone so I at least got he connected and invited to come. Now if my daughter would just heal her traumatized self enough to take me I would be so grateful. Sculptor 44
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Old 01-12-2022, 12:47 AM #5
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Gosh I had an ER visit with a PA/doc that really did me in. Ya know when a doc is that aggressive/ argumentative they can’t get the truth or the information they should. Essentially I feel beat up by him. But I did get the 125 Solumedrol and tho so so so sicker I stood my ground quite well. My daughter even got involved and tried to give him facts and stick up for me. I needed fluids but didn’t get. The guy exhausted me. He said he was gonna go look at my records. There is this thing I have seen happen where a doc tries to push and question my symptoms and generally challenge me. They then find solid info backing up what I said and they kinda disappear. That happened today. Sculptor 44
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Old 01-28-2022, 11:07 PM #6
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Saw my neuro today. Wow was it bad. And in light of a new symptom Blue Toes she did nearly nothing. It just came on more this week. When took shoes off my one big toe was fully dark blue. I see my pulmonologist next week and in meantime will pay more attention. She was difficult in a way I hadn’t seen before. My daughter and I got very direct with her. I took the overnight oxygen data I had sent to everyone before. The first one from May over a year ago says It qualified me for oxygen under Medicare. The second one says I do not because it was a year later and I had started regular Solumedrol. Sculptor44
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Old 01-29-2022, 10:16 PM #7
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Chemar and anyone else that helped me do a reset to get access again giant thank you. Did not mean to wait so long. My life is in a stronger slow motion. Also what long Covid is doing to my brain is nasty an worrisome. Sculptor 44
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