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Remission

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Unread 11-25-2012, 07:20 AM   #21
Anacrusis
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According to the medical literature spontaneous remissions occur in about 10% of the patients and can last for quite a few years. Another 30-40% (or even more) will have remission with treatment. So, that is quite a lot of people.
That sounds like a lot of people….

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She's the only person I know who has had a TRUE remission, although I am sure there are a few other lucky ones. It's nice to know it's possible, but the likelihood of it actually happening is pretty remote.
That would sound like only a few….


30 years, huh? Interesting…and how nice for her! ...Thanks for sharing, 4-eyes.

I suppose spontaneous is not necessarily the same as true remission??

I wouldn´t be at liberty to say I was in a true remission from MG as I have a suspected and not a true diagnosis!
And what exactly would I be in remission from then? SDMG? - (self diagnosed MG?!!!)

The feeling of limb muscles gradually regaining normal functional levels and being able to do increasingly more in the space of an 18 month period is a happy feeling of selective remission - regardless of what 2013 brings. And on top of that the increasing ability to deal with and multitask between fluctuations/remissions whilst maneuvering between suitable and unsuitable medical practitioners/diagnoses/medications and all the confusion that that can bring must somehow lead to the acquisition of some extraordinary new life skills that can be applied to all areas of life as an added bonus

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Everyone is so different, and we all deal in our own ways.
So very true!
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Unread 11-25-2012, 11:45 AM   #22
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Quote:
According to the medical literature spontaneous remissions occur in about 10% of the patients and can last for quite a few years. Another 30-40% (or even more) will have remission with treatment. So, that is quite a lot of people.
That sounds like a lot of people….

Quote:
She's the only person I know who has had a TRUE remission, although I am sure there are a few other lucky ones. It's nice to know it's possible, but the likelihood of it actually happening is pretty remote.
That would sound like only a few….

I agree. This discrepancy between what is written in the medical literature and what we hear from patients is quite bothersome.
I wonder if it is because what is seen as remission by neurologists is merely adjustment, or because those in remission don't come here to tell us about it, or possibly it is a combination of both.
I have no idea how to actually check this.
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Unread 11-25-2012, 03:06 PM   #23
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Originally Posted by alice md View Post
I have no idea how to actually check this.
I think I know who is dishing out all those remissions!!!!!!


It is either this guy......

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Originally Posted by alice md View Post
The same neurologist decided I was in remission, because a repeat sleep study done with respiratory support showed significant improvement (as compared to the previous one which was done with no respiratory support).

Or this one......

He spends way too much time on the beach....

Having a lie in…....

Or perhaps awake and working on his beak-dancing skills....

Trying to win the Grand National....

Doing a spot of fencing......

Learning how to sail......

Learning to tightrope walk.......

Maybe even learning to do the salsa.......

When he has some free time he will come in to his office.......

Perhaps his mind straying a little to his last vacation.......

But most of all he´ll be jumping to conclusions as usual......


Because:

1) He sees you once every 6 months and twice now it´s been on a good day! So..... with your remission....and

2) His wonderful CV needs only a few more remissions for a new and more exciting promotion!


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Unread 11-26-2012, 02:20 AM   #24
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Don't be so cynical

we need to seriously try and understand why this discrepancy exists and how to bridge it.

One possible explanation (in my opinion) is that so many MG symptoms are complex and hard to understand (and manage) that it is much easier to ignore them, or decide they have improved (even if only because of better adjustment to the illness or better supportive care) than to deal with them.

And when your neurologist tells you how glad he is to see such significant improvement in your condition, what are you, as a patient, going to say?

Last edited by alice md; 11-26-2012 at 03:38 AM.
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Unread 11-26-2012, 03:40 AM   #25
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That is a really GREAT question, Alice!

Thank you Alan for starting this remission thread.

I would like to contribute one more thing to it.

I enclose a home made graph of myasthenic activity/remission over a 5 year period.

(It might very well show the profile of a complete nutter and not an MG patient!! But at least I´m a very happy and harmless one )

Stage1 (approx. 2008-2011):


Long drawn out heavy fluctuations with predictable diurnal variations.
Effect of exercise: Severely exacerbating myasthenic weakness.

Stage 2 (approx. 2011-2012):

Seismic-like myasthenic activity.
Effect of exercise: Neutral

Stage 3 (approx. October/November 2012):

Sporadic-like myasthenic activity
Effect of exercise: Beneficial


Thank you again for the opportunity to think out loud here and putting up with a completely warped sense of humor that can sometimes detract from the issues we are supposed to discuss.....!

Have a wonderful week, everyone


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Unread 11-26-2012, 05:33 AM   #26
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Very interesting, but it again raises the question of how do you define "normal" and how do you define "abnormal".

And if the "normal" of 2008 is the same as the "normal" of 2012?

Is exercise beneficial because you have learned to tailor it better to your abilities, or because your endurance level has increased?

And this takes us back to the question of what is remission.

But, in reality it doesn't matter that much, because if a patient feels better it doesn't really matter why.

It only becomes a problem if the patient feels worse and the physician thinks he/she is better.

Or if both physician and patient are in denial of a serious illness.
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Unread 11-26-2012, 12:22 PM   #27
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The way I define abnormal/normal activity for myself is task based using conventional´housework´activities –

Can I peel 12 potatoes for the whole family? Or do I get myasthenic weakness in my hands after just trying to peel one? (2010 etc)

Am I able to wash my hair all the way until rinsing without noticing deltoid weakness? Or do I need some help (2010)

Can my trunk muscles handle me standing in a 5min queue at the supermarket? Or do I need to lay on the floor for a few minutes to regain muscle strength?

And many many more examples. Task type is one thing and task load per diem is another! Basically what I am able to fill my day with.

I haven´t quite reached´2008´on the graph but yes, despite recent symptoms (which were not nice - but at least sporadic - longer and longer times between symptoms whatever those may be) I believe the normal energy levels to cope with a similar day in 2008 are back. 2004 would have been better but then I suppose I was much younger and had not gone through a pregnancy then either.

Exercise activity…. for example a gentle water aerobics class with old ladies that even an unfit 45 year old should be able to handle was causing immediate exacerbation in 2010 whereas previously I had been a strong swimmer. That exact same class today is not enough. Neither is a walk down the street and back up again which also used to be a maximum achievement.

It has sure been nice to have used Mestinon when I´ve had symptoms and seen that it has worked. I can go days now without Mestinon and it is very odd for your attention not to be drawn to some weakness or other during the length of a normal day. In fact it is even stranger for it to be drawn to glimpses of previous energy levels rather than examples of weakness.....

In a few months I may look back and see myself as the perfect example of someone who thinks they are on their way to some sort of remission or other and yet they´re not – it´s all just been one more long confusing fluctuation!

Thank you for posing these good thought provoking questions, Alice.


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Last edited by Anacrusis; 11-26-2012 at 02:08 PM.
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Unread 11-26-2012, 01:01 PM   #28
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Can't help but think about my first visit with the Neuro when he said this is very treatable and I am 95% sure we can get you back to normal. Now don't get me wrong I think he is good and I am pleased I found him but when I think back he did not know what "normal" was for me. I do not exactly look like someone who runs, bikes, kayaks, hikes as much as I did before MG.

I think in part this set me up thinking ok we will do this plasma exchange take a few pills and be back at it in a few weeks. Many days I wonder if this is now my new normal. I have seen marked improvement and can go about daily life with adjustments for fatigue and most would now not know anything is wrong unless they see my medicine cabinet. But this is not my normal. Will I continue to see slow improvement or is this it?

I guess only time will tell!
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Unread 11-26-2012, 02:22 PM   #29
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What's made me try as hard as posable to in prove my symptoms over the last few years is that I want to go to Australia to see my Daughter and her family
Well next April no matter what I'm going as they are getting married
so the last five weeks I've had improvements which confused me as theirs rules
In what I can do and I expect to pay when I push myself to much
That's why I wondered what remission was
It's so good to hear of so many stories that can help many of us have hope
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Unread 11-26-2012, 02:34 PM   #30
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Can't help but think about my first visit with the Neuro when he said this is very treatable and I am 95% sure we can get you back to normal. Now don't get me wrong I think he is good and I am pleased I found him but when I think back he did not know what "normal" was for me. I do not exactly look like someone who runs, bikes, kayaks, hikes as much as I did before MG.

I think in part this set me up thinking ok we will do this plasma exchange take a few pills and be back at it in a few weeks. Many days I wonder if this is now my new normal. I have seen marked improvement and can go about daily life with adjustments for fatigue and most would now not know anything is wrong unless they see my medicine cabinet. But this is not my normal. Will I continue to see slow improvement or is this it?

I guess only time will tell!
I think you have raised a very important point. It is important that both physicians and patients will have realistic and similar expectations.

When you first become ill, your normal is what it has been before. Anything different than that is not normal. Anything different than that is a compromise and requires adjustment. Your normal may be more than your physicians normal and still that is how you want to be.

I can fully understand why someone who was able to run the marathon is not content with being able to perform the normal activities of life.

If superman suddenly can't fly and hold buses and becomes a completely normal person, he will feel a significant loss. The fact that everyone around him including his physicians can't fly will not make it easier, at least not at first.
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