What is remission is it when the symptoms are less severe or that they go all together I get sometimes a certain muscle like breathing or swallowing or talking or arms legs or even fingers become weak and it varies or even being able to think becomes confused depending also on the weather which plays an in portent part on how my MG behaves its so confusing then when I expect it to become worse because I've pushed myself it sometimes doesn't punish me which then is odd and just confuses me.
Alan

Hey, Alan. There are basically two kinds of remission. There is drug-induced remission, where you are still on drugs with no MG symptoms. Then there is drug-free remission, where you aren't on any drugs and have no MG symptoms.

Then there are "grades" of having MG, where you can have anywhere from mild to severe symptoms. See Table 1 in this article. And those symptoms can fluctuate day to day, hour to hour. I know, it's beyond frustrating!

http://ats.ctsnetjournals.org/cgi/content/full/70/1/327

http://www.aerzteblatt.de/pdf/DI/104/7/a420e.pdf

I've taken to filling out the Quality of Life (QOL) survey for my neurologist at our appts. It tells him how I've been doing most recently or in general. Click on the PDF file to download a copy.

http://www.myasthenia.org/Livingwith...ityofLife.aspx

I hope that helps. Everyone who has MG is different, as I'm sure you know, so it's more important what your particular progress is.

I've stopped trying to figure MG out. I just go with the flow and adapt my day accordingly. It's not fun but what choice do we have?!


Annie

Hi Annie
So when it's mild and your able to do more that isn't remission and its normal for it to vary what muscle it makes weak I'm more confused now than I was that first year when it was really bad and I had to take lots of drugs

Over the last 2 years my MG has varied by great amounts. I am currently going through a good spell. However I have NEVER returned to my normal condition of 2 years ago. So I would say I am in medication remission NOT total remission. I am so thankful I am able to function at a almost normal pace for the holiday period.
Mike

I'm so glad to hear that, Mike! I had a big flare (probably the price I paid for my trip to my niece's wedding), but either I'm coming out of the flare, or the new higher dose of Imuran is kicking in. I'm better, too. I find myself doing things I wouldn't have even considered a few weeks ago--just little things like making cookies in the late afternoon. My two college kids are coming home today for Thanksgiving, though, and I intend to turn most of the cooking over to them! But I am really enjoying feeling like doing things.

Abby

Thanks mike and Abby
So a flare up means symptoms become more severe
With me it's just so confusing am I getting better cos I can do more or is it cos the weather is much better for me I've never been able to go out for five days in a row which I have now I guess being able to talk breath swallow must be good thou I have felt better when I've felt bad again and that doesn't make sense it's a case of not understanding MG only a MG person could ever understand that which I did
Alan

I just do my best to remain calm (no stress) get plenty of rest which includes a nap. I did have a couple of bad days the last few days but today much better. Now I have 3 suspects 1. had large skin cancer removed (stress) 2. the meds the Dr gave me for removal 3. Family squabble over Thanksgiving (stress) I really can't decide which it was. I just try to do the best I can each day to conserve energy. Sometimes I win and sometimes I lose. It is a long learning process.
Mike

Annie – using 3 quantitive scores total for MG from 3 different sources I will have gone from a severe to mild in two of those categories which is way good enough to count as´remission´for me. But what I do wonder is where trunk muscles fit under the test item column! A.

Thank you for this very interesting thread,

Every time I think I am done thinking about MG, I realize that there is still something new to think about.

This is a question that has been bothering me for a long time.
Physicians, after reaching a diagnosis have to make management decisions. Those are based on the severity of the disease/prognosis without treatment/ability to monitor response (or lack of response) to treatment and effectiveness of treatment.

My encounter with numerous neurologists made me realize that those are very muddy waters in MG, as even leading experts are unable to answer any of those questions.


How do you define severity of MG? And is it possible to do that?

From this paper it seems that the answer is-not. As this is what leading experts in an MGFA task force think:

I then looked at what a few MG patients said about their own experiences:

So, both physicians and patients are totally confused regarding the severity of this illness.
The question is: are they looking at the right thing, or possibly because they are looking at the wrong thing, it appears totally arbitrary, makes no sense and goes from severe to mild within a short period and sometimes back again.

My answer to this question is that they are not looking at the right thing. They are looking at the wrong parameters and that is why it is so confusing.

8 years ago (before I was ill) I had two patients with leukemia. They both received high dose chemotherapy.
One was in the ICU with severe pneumonia, intubated and nearly paralyzed.
The other was sitting in her bed and cheerfully chatting with me.
Which of them had a more severe illness?

You would probably say that the first.
But, you can't answer this question without a very important parameter-the results of the bone marrow examination.

The first had a completely normal bone marrow, whereas the second had residual leukemia.
That is why the first patient is now alive and well (after a very rocky course and recovery), whereas the second patient died a year later.

What made the difference?-the nature of their leukemia and how well it responded to the currently available treatment.

30 years ago, both patients would have died. But, now we can cure nearly 50% of those patients, because we can diagnose, classify and adjust the treatment.
As we learn more about the underlying mechanism of the disease, we can better stratify and better adjust treatment. Some types of leukemias can now be fully controlled in the vast majority of the patients, whereas for others we still do not have effective treatment. But, we know quite early in the course of the illness which patient will quite likely do well with a given treatment and which patients should be referred for experimental approaches.

The first patient was transiently ill, because of a severe infection which temporarily endangered his life. The second patient did not have such a complication, but this did not make her underlying illness less severe.

The reason this is not so in MG, is mostly because there are no tools by which neurologists can clearly stratify patients. Because, as I said, they look at the wrong parameters.

MG is not a disease of muscle paralysis or even weakness. It is a disease of muscle endurance. Muscle strength changes and fluctuates, but muscle endurance does not, or at least it changes much less.

So, assessing strength doesn't make much sense.

Likewise, assessing the severity of an illness, based on a transient complication doesn't make sense. (just like it doesn't make sense to asses the prognosis of leukemia based on the severity of infectious complications).

In my opinion:

There are two parameter which defines the severity of MG: one is the extent of involvement (how many muscle groups are involved) and the other is endurance and exercise tolerance.

No neurologist I have met ever measures it and most patients don't either.

In my opinion the following should be assessed:

1. The maximal amount of activity an MG patient can do. This should best be done on a treadmill with a full cardiorespiratory exercise test. But, it can also be done with a simple walking or bicycle test.
2. The time it takes to recover after maximal exercise, 70% of maximal exercise and 50% of maximal exercise.

In patients who have involvement of only one group of muscles the same should be assessed on that one group.
For instance if there is only arm involvement-the arms should be exercised to fatigue instead of the entire body.

The other important parameter (just like in leukemia or any other disease) is response to currently available treatment.

Once disease severity can be measured accurately, response to treatment will also be better monitored and the time to assess response will be better defined.

If someone could only walk 100 meters and it would take them 2 days to recover before treatment, and one week after treatment can walk 120 meters and it takes them 1.5 days to recover, it would be a significant response which could easily be missed if all you do is a rapid assessment of strength and even QMG score in the physician's office.

If you follow the right parameters you will see improvement, instead of becoming confused when receiving effective treatment. You will also not have so many "remissions" and "flare ups".

Yes! Makes me think that in MG you have measurable antibodies but the level of antibodies does not correlate with disease severity and then there´s those seronegatives!

I couldn´t help but think that in 2011 muscle weakness in one category was severe (deltoids, trunk, neck) But in 2012 muscle weakness was mild in the same muscles but spreading slowly to more categories (breathing muscles, swallowing and eyes). So if I did have MG, that parameter in my case would mean that ´less is more´.

In my case the physicians are not looking at the wrong thing they are not looking at all. But for every time that they have missed a new development - I have been closely watching what I now in hindsight would call a very slow progression to a myasthenic peak in severity followed by an equally slow progression into remission. (with one small exception)

What I have noticed about a slowly progressing remission is that NOTHING is able to get in the way of it in the exact same way as nothing got in the way of symptoms gradually progressing to a peak a few years ago. Stress levels, fitness level and nutrition all appeared to play secondary roles. Mestinon does not seem to be interfering with the bigger picture and perfectly exponential curve towards remission as I take it irregularly for irregular symptoms and the fluctuations are following and adhering to that dominating curve very obediently despite their erratic nature.

The amount of information and dialectic on this forum has made me comfortable enough to summarize my own symptoms during my years of´visible´myasthenic muscle involvement in a way that despite continually fluctuating parameters, if I walked away from this forum tomorrow I would have enough information to make a concluding summary that has not only helped me to find my own position on the myasthenic scale but has also given me tools to process and classify my experiences in a way that I can confidently use as a conclusion or even a new beginning if need ever arises.

And that is probably the longest sentence I ever wrote in my entire life.

So, after reading this thread, I wish that Alice would be in charge of all MG specialists and research for diagnosis and classification at a worldwide MG central somewhere.


My observations since May 2011:

• Extremely gradual role reversal of exercise severely exacerbating myasthenic weakness in 2010 - to a more neutral position over one year later and then finally some positive effects post exercise late in 2012

• Very gradually increasing amount of activities per day from one to three

• Very gradual increased increments of fine motor muscle skills over the space of 18 months including going from not being able to open a packet, turn a key, pull a weed, type a single sentence to..well....actually typing thousands of them

• Gradually increasing neck muscle endurance (lego on floor with child one hour)

• Very gradually longer periods of sitting - from maximum 5 minutes upright in a chair April 2011 -
  to entire long haul flight in November 2012

• Gradually longer walks

• Going from not being able to lift a small pillow to being able to lift a heavy child

• Very gradually going from being able to hold flute to face for no more than 5 seconds to being able to play instruments again for normal and longer periods (over one year to regain finger dexterity for piano playing)

• Very gradual - less hours of payback time after activities (4 weeks of severe payback time after minimal gentle exercise in August 2010) to November 2012 (zero payback after return longhaul flight, work the very next day including overtime and lego activity with son.)

• Gradually noticing myself standing whilst others are fatigued and needing to sit down

• Meeting more and more new people because trunk muscles hold me standing for longer periods of time and voice and lung capacity is stronger for longer periods of social interaction.

Because of prolonged periods of coughing on my spit and breathing issues I wouldn´t have even considered writing this - except that it is only now that I am really noticing some re-acquaintances with the old energy I had from 2004 (an extremely fit person with minimal intervention!) To be able to repeatedly access increasing previous energy levels is surely not typical for MG.

I am extraordinarily grateful that the progression of remission from myasthenic weakness is such that I fortunately can afford to make my own parameters at least at this very moment in time, and thanks to a few, those parameters have oddly enough ended up being the most stable and coherent ones of all...


Anacrusis

(I may very well regret writing this in a few months! Thanks for the opportunity for thinking out loud...)