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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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03-25-2022, 04:42 PM
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Feel somewhat reborn with body given IVIG. And to give HUGE credit where it is due, It was the ER doctor who said this is gonna happen!!!! He started it within an hour of my arrival. I plan to find a way to thank him and support him as I have experienced seeing doctors who strongly support here CRUSHED.y other docs. When the local neurologist in my city who knows my brain lesions and some history came to check in he railed on me to never expect IVIG again. But when I gave him the pulmonologist notes from Mayo cause he said he couldn’t get access he backed off . He’s a very emotional guy. I was prepared. Sculptor 44
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03-26-2022, 03:16 AM
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Hey Sculptor,
That's great news. I like this emotional guy of an ER doctor. He sounds wonderful. I hope you find a way to thank him. Glad to hear your good news. Best wishes, Atty |
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03-28-2022, 10:35 PM
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Yes I plan to contact the patient advocate to share how much he meant to me. In my experience it is an act of bravery. This advocate has been kind so I know she can get my thanks to him. Sculptor 44
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03-29-2022, 07:51 PM
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I was up to doing a little phone support call today. So so grateful. I am loaded kinda with new happenings. My pain medication quickly went sideways in hospital. They changed the dosing. That’s why I went home sooner as 2nd day pain was awful from the lack of support of my head. I really need to use the head support collar my orthopedic doc ordered. The most disturbing thing was the old neurologist I mentioned announcing strongly shortly into visit that I would NEVER be given IVIG again! And that it costs $20k ( so shame on me in other words). I have not seen this Doc for at least 2 years. My chest is better today. And maybe minor thing but a good sign to me is the scabbed growth in center of my forehead is so better it is nearly gone. I had had this for a year. It couldn’t heal. I finally got an accommodation on the big case review meeting. It is next week. I am with out an aide now but there are pieces of activity and former aide said she could temporarily do a couple hours at $25 each. Sculptor 44
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| "Thanks for this!" says: | Atticus (04-13-2022) |
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04-01-2022, 07:54 PM
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I finally got Sun today which I needed SO SO bad. With my severe Vitamin D deficiency it can affect me fast strong especially head and sleep. Also it very much helps me heal. It had been nearly 2 weeks! So very much is going on. The hospital Neuro ordered a sleep study. This issue is too long to cover now and just the fact that he dramatically underestimates how disabled my body is so being at the study place WOULD NOT be as possible as he thinks. Sorry if some this didn’t make sense. Tomorrow will be a lot better. Sculptor 44
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| "Thanks for this!" says: | Atticus (04-13-2022) |
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04-04-2022, 10:47 PM
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I am still sicker. Have the Assessment meeting Thursday so I tried to work on decisions on how to get through this week given still struggling.. I did a full scan of hospital record I had to start I have never seen my blood labs with this much abnormal. Notes did reference this IVIG as first one. I know just IV fluids at least would help me get to Friday. My chest is my biggest concern tho throat part of it. When I have to talk I have such a big response. Whole chest shuts down and feels awful. Depending how long I talk it can be days.. I have consistently told medical folks that something else is going on thru my chest beyond what I have had for years with my Myasthenia.. at least this last time one person at least documented my chest stiffness. And this has nothing to do with anxiety. What ever it is it at times feels,like muscles spasms in chest tho generally it is more diffuse like any flat surface in my chest has turned into a wall. My daughter found the rest of the doctors notes online thru hospital so I need to see what the neurologist who knows me Said. I have appointment with new homecare person tomorrow. I hope my body has the strength for an outing with her. Sculptor 44
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05-10-2022, 09:39 PM
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I have noticed good things from IVIG. A sad piece is the great brain changes early on seems gone. Also this new thing that seems like Renal is of real concern. I had issues in this area before. I was told I had POTS many years ago so anything that messes with my fluids is impacting. There is a lot going on including big weather changes so I need something to ease up. Sculptor 44
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