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Old 02-28-2017, 11:29 AM #11
AnnieB3 AnnieB3 is offline
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AnnieB3 AnnieB3 is offline
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I like humor as much as anyone. And I do laugh at myself when I fall as well. But being so bad that you fall, frankly, is not funny. A fall alone can injure or kill someone. MG can, too.

What I like about Schooners, besides the beach and sunset, is the fact that it is such a fun place. They do sand castles, have celebrations with bands, and I've never seen anyone hurting anyone else. True community.

I'm not as upbeat lately as I usually am. My mom isn't doing great. I'm her health advocate, and am double doctoring. It's amazing how often doctors make mistakes, keep info from patients, can't speak openly around us, and need a few tries to get it right. Sure, they can do great things. Having the best care is up to each of us. But why do they make that so hard to receive?!

I hope you are able to be seen soon, Jane!

Annie

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Old 03-02-2017, 10:42 AM #12
FREDH FREDH is offline
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Quote:
Originally Posted by AnnieB3 View Post
I like humor as much as anyone. And I do laugh at myself when I fall as well. But being so bad that you fall, frankly, is not funny. A fall alone can injure or kill someone. MG can, too.

What I like about Schooners, besides the beach and sunset, is the fact that it is such a fun place. They do sand castles, have celebrations with bands, and I've never seen anyone hurting anyone else. True community.

I'm not as upbeat lately as I usually am. My mom isn't doing great. I'm her health advocate, and am double doctoring. It's amazing how often doctors make mistakes, keep info from patients, can't speak openly around us, and need a few tries to get it right. Sure, they can do great things. Having the best care is up to each of us. But why do they make that so hard to receive?!

I hope you are able to be seen soon, Jane!

Annie

Annie,
Sorry about your Mom, hope everyone better soon.
Later--Fred
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Old 03-04-2017, 07:01 AM #13
Jane1 Jane1 is offline
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Default chest pain

Funny you just wrote this, but sadly I didn't remember. Had an early morning visit with Dr yesterday morning because the mg was rapidly becoming worse. While driving to my appointment my chest for the first time in my life started hurting and thrice went up to and tightened up my neck. Thought often of pulling car over and calling for an ambulance but I am afraid of these hospitals. Made it to the dr and chest had thankfully quit hurting. Was thrown straight into ekg mode and the ekg came back abnormal. Off I'm sent to spend the next 10 hours at the local stupid hospital. Many tests, no heart attack, no blood clot, no pneumonia, but a high white blood cell count. Diagnosis....myasthenia gravis. Well duh. I sort of knew that but had to be sure. Start more infusions today for 7 days. Was assured by my PCM that she and my neurologist care greatly about me and will not let anything happen to me. Whe lost her voice in tears when telling me how upset she was that I have been so mistreated for so long. Fears that lack of treatment has presented me with an exasperated case that is going to be quite difficult to maintain. She implored me to trust Dr. Jacobs because he has called her three times and visited her once to discuss my condition. The reason he wants me to go to Shands Hospital is they use plasmapherasis ? and robotoic surgery and he wants me seen as soon as possible. Thoughts? I appreciate. I certainly hope your mom is doing better. I feel your stress.
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Old 03-04-2017, 12:26 PM #14
AnnieB3 AnnieB3 is offline
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Oh, Jane, how awful! You SHOULD have dialed 911. Next time, do that. Hopefully, you won't have a next time. I still don't find this funny!

Try not to fear a hospital. Sure, they can make mistakes. But they are also very good at helping people.

The doctors need to investigate that high white blood cell count further. I wonder if you broke something during your fall or have a hairline fracture. Please, ask someone to check that out. A high WBC is not a symptom of MG. Have you or anyone else looked your entire body over for bruises or other signs from the fall? If not, someone should.

Your doctor sounds very kind. That really helps.

But she might be wrong about how your MG is. What happens when MG isn't treated well enough, or pushed too far, is that it gets so bad that it takes more time to recover. That's one reason I mentioned that steroids do more harm than good in the long run. I believe that they create "brittle" MG. MG can be made to be stable again. But it does take proper treatments and time. And a MG patient who doesn't push themselves to the limit. Ahem. You are as much in charge of how MG does as doctors are. Probably more so.

Right now, you need to think of yourself as being physically bankrupt. You can't afford to expend/spend any energy. Your body needs a break, probably for months. Take that seriously or you will just be back in the hospital.

Shands is a long trip from Panama City. Can you even handle a trip like that now? Are they the only place close that does plasmapheresis? You may need a medical transport. You really do need a place that has experience with MG!

You can't have a thymectomy in the condition you are in. And it might not help. It could, but you have to weigh the very real risks of surgery against any potential benefits. You need to be stable first, AND decide if that is right for you. Ask a lot of questions. Or ask, "Tell me everything about a thymectomy," and let them do all the talking. You need to rest those muscles, too!

Do you have someone who can be with you if you go to Shands?

I'm sorry that you are going through so much. But the good part is that you are receiving care now. But the rest of the care is up to you. Don't walk far. Don't do very much at all. Use paper plates, etc. so you don't have dishes piling up. Seriously, every little thing in your life needs to be rethought. You can't live your life the way you used to, at least not now.

I hope you will recover soon. We're all here if you need us!!!


Annie

BTW, get copies of ALL of those records. Doctors don't tell us everything. And they might see a test result as nothing, when it may be a clue to something else.
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Old 03-04-2017, 03:16 PM #15
Jane1 Jane1 is offline
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Honestly working on all of the above. Promise to quit trying to overdo. My brother is the only person in my corner. I think these two Drs have my best interest at heart. One even cried over how I have been mistreated. She gathered up all my records. We will travel to Shands in our motor home and I can sleep all the way in my own bed😎 Oh yes. A can of green beans fell on the top of my foot.two months ago and broke it. I didn't want to stress myself by the follow up appt this week. It no longer hurts but maybe I should have gone😠
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