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


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Old 09-18-2021, 11:13 AM #1
Sculptor44 Sculptor44 is offline
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Default Covid diagnosis from Awful doctor at ER

I have been so so bad off thatís why I have been gone. I really had to fight this doctor on every thing! And I am so so furious that I Had to go threw a ton of cardiac crap when I finally lost it and yelled help me with my breathing! I never got help during entire visit and I was made miserable and unable to move and so cold cause too busy to do blanket. I had to do a final argument with doc about solumedrol and how it didnít make sense to him and I said my legs and my Myasthenia need it so I donít keep falling! I have fallen 3 x in past week. So I got offered monoclonal antibody thing but they stop processing requests over the weekend and by Monday they said I likely would be considered out of treatment zone. I am gonna call my neurologist office the weekend phone and tell them I am in trouble here. Sculptor 44
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Old 09-18-2021, 03:44 PM #2
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Quick word on nurses as your best friend in the presence of a bad doc. My nurse gave me a random heads up that doctor planned to catheter me for a urine test. It gave a chance to say Hell No! A similar thing happened when I was a young pregnant mother.. My last catheter was during my 2nd birth. And I said never again! Sculptor 44
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Old 09-18-2021, 05:19 PM #3
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Covid diagnosis? You mean your test came back positive?
That's terrible news.

You're admitted and still in the hospital?

Good grief, they stop processing a potential treatment on a weekend??

Thinking of you.



[Yes, I agree about most nurses.]
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Old 09-19-2021, 09:56 PM #4
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I'm hoping that you are OK.
I came back to edit above post to make it easier to read but I missed the edit cut off time.

Very concerned about you.

I'm hoping that there was some type of error and that you're actually fine and at home now.

Looking forward to a post from you in the near future.
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Old 09-21-2021, 10:14 AM #5
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Hi Sculptor44,
I understand that many hospitals in some areas are very short on staff just now because they've been overloaded with COVID cases. Maybe that's what's been happening with you. I hope you can get some decent treatment in spite of the uphill battle you're having.

You might need to keep reminding staff people as they come along that you have myasthenia gravis. Doctors have a way of not referring to a patient's chart or medical history, particularly if they're in a hurry. And they're always in a hurry, seemingly.

You fell 3 times in the last week? I hope there were no serious injuries.

Yes, nurses are a great resource!
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Old 02-20-2022, 11:39 PM #6
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Because of recent Solumedrol at ER my Vision is some improved so I was reading this feedback mostly for first time. My vision is so so variable. My left eye is worse in someways. I canít look to that side without my getting extreme double vision.. I so want to be well enough to get some help with my eyes. I did get positive Covid-19 test at ER but they did not admit me. They said I could get antibodies treatment but it was confusing on how they decided if you could get it. Iowa City said if I were seen there I would have gotten it. I signed up this week for a research project thru Johns Hopkins on how those with immune system and transplant situations do with vaccines. If anyone wants to know how to find this info let me know. I do so appreciate all your thoughts and writings. Sculptor 44
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Old 02-21-2022, 12:12 AM #7
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The research project sounds very interesting. I don't have MG as you know by now, but I am on Immunotherapy for cancer treatment so my immune system is very revved up.

I did very poorly with my vaccines for covid. It's taken me a long time to really recover. I was too ill to even have my cancer treatments at the time. The second vaccine was better than the first. I was advised to take antihistamines before and after and the side effects weren't as severe.


You're "sounding" much more settled. I'm happy to see that.
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Old 02-21-2022, 02:14 AM #8
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I'd be interested to know how the research project goes, Sculptor. Good luck with it.
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