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MG Hit hard today

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Unread 12-21-2012, 08:26 AM   #11
alice md
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Originally Posted by StephC View Post
Alice

Are you at phase vi and how did it take you to get to that point?
I hope I am. It took 7 years, a lot of trial and error, a lot of documenting, thinking, reading, learning; Traumatic hospitalizations and many times of near-despair.

Annie,

I am very fortunate that it is agreed by all of my current physicians (including myself) that going to the ER for me is totally useless. I have everything required at home and can call them all if I need their support or advise.

This also took many years and an almost impossible quest.

If I didn't have this privilege I would probably also be in phase X or even XI.

Quote:
thinking you can CONTROL MG by seeing patterns is deceptive. It takes time to figure out how your own specific type of MG will respond to activity, treatments and so many other things like heat and lack of sleep.
I fully agree with that. This is why I mentioned those phases and the long time it takes to learn.
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Unread 12-21-2012, 10:40 AM   #12
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Originally Posted by Quandry View Post
I need to realize that even though I'm taking Mestinon, that I shouldn't over-work myself. I tend to push myself too far and I don't really know my limitations. It seems that I don't know when to stop...
Ill say it a different way......

I got much better at not pushing myself as hard as I used to and am actually quite proud of the overall progress I made with that process over a 3 year period. (my body was taking care of some of that with gradual adaption as if in autopilot mode)

Also, getting others to match their expectations with my own expectations of myself eventually turned into a happy development

You got some great advice on this thread. Wish you the best of luck with this process however you do approach it. (very carefully I hope!)

I feel I did a really good job getting better with this issue and I hope you will too


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Unread 12-21-2012, 11:32 AM   #13
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Originally Posted by AnnieB3 View Post
Because thinking you can CONTROL MG by seeing patterns is deceptive.
Annie
Annie,

Thank you for your opinion.

I dont think that seeing patterns in MG helps to control it - it just helps me understand it a little better.

Anacrusis
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Unread 12-21-2012, 01:56 PM   #14
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[quote=alice md;941417]I hope I am. It took 7 years, a lot of trial and error, a lot of documenting, thinking, reading, learning; Traumatic hospitalizations and many times of near-despair.

Not less important. I reached phase III on my own, but I believe that going from there would not have been possible without my amazing neurologist.
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Unread 12-26-2012, 07:02 PM   #15
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You need to call your neuro and say what happened. They [b]might want to see you!

Anacrusis, Just don't kid yourself into thinking MG has some kind of predictable algorithm. It still surprises me.

Annie[/quote]




A couple weeks ago my daughter ( after big stress) had a very bad breathing time,did not want to tell me, and call 911.They took her to the hospital,I even not sure she could explain what was wrong with her,probably she could ( we did for her a list like ID bracelet with info).The Dr ( they now called " hospitalist") ordered Solumedrol,she did have a few breathing treatments. After that they discharged her, advised to contact her Neuro.
Two days later at night (thank God, she was with me),she started non-stop coughing,breathing treatments did not help.I knew she is getting worse,and tell her that I call 911. She said: I was there already....they did not help( ???!!).I did not listen....While ambulance approaching she said: I can't breath.....When they came, I just gave them our list,so they can do all this paper work ( I could not talk clearly.....).I was just repeating: you might not heard about it ,but this is MG,MG,MG,neurological condition.....One paramedic told me: "I know...".I ask : Do you have C-pap?- Yes,we do in the car.- Please,bring it now!!- Wait until we get to the car- Please,now! - Wait.........
In the car I was asking the same.One paramedic said to other: put C-pap, so mom shot up ( !). It helped .
In the hospital,they continue with this for about 1 or 2 hrs ( I din't know the time).her weakness became better,and breathing too. And of course,they were ready to discharge her,just said to continue Prednison Dr in first ER ordered,breathing treatment,and CALL THE DOCTOR TO MAKE APPOINTMENT.
For the next four (!)days I spoke with his nurse,she said she can not get in touch with him.Then she said to make appointment. They wanted scheduled her for January (!) So,THEY DID NOT WANT TO SEE US RIGHT AWAY.Long story short ( sorry,not too short...),she got appointment in two days.He left her on Prednison for a month.He refused to order IVIG. He NEVER heard about Mytelase .He let me know that all doctors do same thing for MG ,he did not want to do anything that they did not talk about on their conferences..( I did not asked him to...).
Well,she is better now,but she is the one who doesn't know " when to stop",she is young,and kind of "in denial".Now,I hope,she realised how bad and how quickly this could be.But...." When is When?"....
Sorry,it was very long,just wanted to vent.....

Big Thank You to all of you,who are here to share,to advice,to vent,to inform ,or just to read and " feel for".
Happy Holidays,my friends!

Marina
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Unread 12-27-2012, 04:08 PM   #16
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Hi Marina,

I am so sorry that you and your daughter had such a (needless) traumatic experience.

Non-invasive ventilation in MG when started on time can lead to dramatic improvement. This is unfortunately very poorly understood by most health professionals.

From the way you describe it, quite likely, if it weren't for your "nagging" she could have ended in the ICU on a ventilator, instead of being discharged on the same day.

Some MG patients get approval for a home respirator. This gives peace of mind, and allows occasionally pushing yourself (without ending in the hospital).

Maybe you can try and get your daughter to have a proper respiratory evaluation, including a sleep study and approval for a bipap at home.

It is quite normal for a young girl not to know when to stop. It is hard for much more experienced people. But, she should have the proper support available to her.
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Unread 12-27-2012, 08:24 PM   #17
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Quote:
Originally Posted by alice md View Post
Hi Marina,

I am so sorry that you and your daughter had such a (needless) traumatic experience.

Non-invasive ventilation in MG when started on time can lead to dramatic improvement. This is unfortunately very poorly understood by most health professionals.

From the way you describe it, quite likely, if it weren't for your "nagging" she could have ended in the ICU on a ventilator, instead of being discharged on the same day.

Some MG patients get approval for a home respirator. This gives peace of mind, and allows occasionally pushing yourself (without ending in the hospital).

Maybe you can try and get your daughter to have a proper respiratory evaluation, including a sleep study and approval for a bipap at home.

It is quite normal for a young girl not to know when to stop. It is hard for much more experienced people. But, she should have the proper support available to her.

Thank you,thank you Alice.
I must say a 100 times more "thank you " to you,because if it's not for you ( you mentioned quite often about non- invasive respiratory support),I would never knew about it .
Yes,we have unfortunate experience with ventilator,when she was in ICU after thymectomy,for 31 days(!).
Yes,we realized.that the only way to get this kind of device is through a sleep study if she would be diagnosed with "Sleep Apnea".
So,we ask Dr to order it ,and she is going to do this in January.She did have breathing tests done a month ago,before all this happened,and she said it was good .I don't have a copy of this ( my daughter doesn't want me " to control" her,but she is not good in keeping track of those things). It's always surprises me,because she is very bright and intellligent in everything she does, but when it comes to her disease....
Anyway,thanks again for your support and your quick response.
All the best.
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Unread 12-28-2012, 09:35 AM   #18
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Quote:
Originally Posted by AnnieB3 View Post
I

"newbies" like Quandry are the people I normally spew that out for. Why? Because thinking you can CONTROL MG by seeing patterns is deceptive. It takes time to figure out how your own specific type of MG will respond to activity, treatments and so many other things like heat and lack of sleep.
Being a newbie, I am looking for ways to CONTROL MG. And just when I think I have it figured out...Boom something new and more severe arises. I was under the belief that once I started treatment I wold stop getting worse. I believed that once I was on prednisone I would start getting better and thought I would be in remission by now. I think I have been in denial and I am very stubborn. I hate asking for help, I hate not doing what I want to do when I want to do it. This has caused me to be angry and sad I keep hoping that the Dr. is wrong and I don't really have MG and life will go back to normal.
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Unread 12-28-2012, 10:29 AM   #19
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Me too.....................
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Unread 12-30-2012, 09:05 PM   #20
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I have read in multiple sources that it can take 12 to 18 or even 24 months to get stabilized which i think means to not getting any worse as opposed to what i used to think of as the result of treatment (cured, gone, no more symptoms as in i have infection i take medication and the. I have no more infection).

Any opinions as to whether or not that is the same 2 year window during which literature says MG usually gets to its worst?
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