Remission
 

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 :hug:

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?! :cool:

:hug:
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
:hug:

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 :eek::hug:

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".

MG makes you think - a lot....
 

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...)

20 years ago, after nearly a year of having gradually worsening symptoms, I started having a slowly progressing remission (I like this terminology).
And just like you say-nothing got in the way of it.
I remember cautiously going back to playing with my son in the park (no problem), instead of sitting and passively watching him play. And then deciding I could start my internship (no problem, except for my voice which continued to be softer for another year or so). At first I made sure all my night shifts were at the end of the week (so I could rest after that), but then realized there was no need for that.

My spontaneous remission lasted for 15 (wonderful) years.

I do have to say I almost fell off my chair after reading this response!
I´ve only ever read about spontaneous remissions in MG after thyectomy....
And I have never heard of anyone else having an experience with´slowly progressing remission´....
In fact, I´ve wondered why I haven´t even been able to locate very many descriptions about remissions at all!

I believe that the main reason for that is that people in remission gladly live their life and don't bother to come and tell us about it.

I can promise you that during those 15 years I thought very little about MG (mostly that I didn't think I had it, but regardless I probably wouldn't have thought about it much anyway). Being a physician I saw a few patients with MG during my training, but wasn't more interested in it than in any other relatively rare disease not in the field I was going to specialize in. (you can't know everything about everything).

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.

Yes indeed! I can see why they would want to get on with their normal lives, as you say, and not look back if they could get on with those lives exactly as before.

But for me the process of remission has sometimes been as overwhelming and equally confusing as the process towards decline.

Though I´m not entirely 100% sure of my own status, I think anyone who has ever gone from MG to remission or back again has a story that is worth writing down :)

I can understand that, but your course has been overall unusual.

altering improvement and worsening give a sense of instability. whereas remission gives a sense of recovery.

I believe that the first few weeks or months of remission are confusing and require re-adjustment. It takes you time to realize that you can truly do everything just like you did before.

If during that period you have another relapse, it may be overwhelming and even more confusing.

I am also not sure that you have a true remission and not just the ups and downs of this illness and the beneficial effects of medications (even if only mestinon).

I can tell you that some of my tests were done during what I thought was a very good period (as I compared them to less good times and probably forgot what being truly normal was) and the results were very far from remission.

On the day I had my cardiorespiratory test, I asked my pulmonologist if we should not postpone it as I am going through a very good period. He said that quite the opposite he wants me to do it when I am able to exercise without having breathing difficulties after the first few steps.

I asked a similar question before my sleep study and more elaborate respiratory evaluation. I was told that if there is a problem it will be detected even if I am doing relatively well.

The results of both tests was in the range of 30% of normal.
And the effort required to do them brought me to the edge of my ability and the need for a few days of recovery.

Thank you for a very interesting read. I plan on looking deeper into the links that were posted tonight or tomorrow when I have a bit more time. I think Alice nailed it in saying people tend not to visit when things are going well.

As for me I have not checked in for a bit here. I did finally give up on the short term dream of running the Disney Marathon in January. I was in a bit of denial and I think in many ways trying to prove to others I was not going to lose this battle. I still plan to get back out there running but the goal is now long term and I will take it week by week if not day by day at times.

I have seen almost complete recovery in my vision. After 7 weeks of constant 24/7 double vision I am now seeing single 95% of the time. I still however find my arms and hands fatigue really quickly and my legs while a bit stronger than the arms are also fatigued easily. Both are improved quite a bit from my low point of October 1st. I am able to do most anything around the house as long as I use common sense and do not try and be a hero.

The neuro has approved me doing some running but has limited it to 30 second to one minute run intervals with a walk between each until I feel I have recovered enough to run/jog again. I have been out for as long as 2.5 miles now. Next weekend I will try a 5K run/walk for arthritis just to keep me moving and if I land walk the whole way so be it.

I hate taking all the drugs. I am now up to 1500mg of mycphenolate daily. (bumped to 2000mg on the 26th.) 80mg of prednisone every other day, mestinon 60% every 3 hours, with mestinon timespan overnight. I am trying to take less of the mestinon during the day many days only taking it 3 to 4 times as I feel the need. The side effect have been minimal the worst being insomnia and my BP has been all over the map on both the high and low ends at times.

I thank you all for the guidance and advice I have gotten here. I have been able to walk into my docs office with knowledge and the ability to ask the right questions and I am thankful to have a neuro that seems to respect I have done my homework and respects what I have to say. It does not hurt to have my wife who is an RN sitting with me at my appointments.

Yes most likely not a true remission.....

What is strange is that since May 2011 none of the smaller relapses have ever been able to deter extremely gradual improvement in, as you say, overall muscle endurance, and slowly increasing activity levels and this improvement already started well before my first trial doses of Mestinon which I also haven´t taken since last Wednesday.

I admit the type of breathing problems on airplanes starting this summer do make me aware of possible overlapping levels of myasthenic activity. Nevertheless even this new addition is not altering the overall direction of the curve towards increasingly normal day to day functioning. (I could quite easily draw a graph)

Who wants to go through a neuro or pulmonologist visit whilst´asymptomatic´when it´s already hard enough turning up with severe symptom manifestations! But I see, in certain instances a pulmonologist might just provide the´cinematic´technique needed to better capture myasthenic weakness than the´snapshot´attitude of some neurologists, which I know can sometimes fall short.

Thank you for sharing your professional opinions :)

I actually know someone who has had a TRUE remission! The woman is in her mid-50's now, but has had MG since she was 8. She did the thymectomy, mestinon and pred, as that was about all there was back then. In her mid teens, the symptoms began disappearing. Right after college she had another few rough months then everything MG just vanished! She's had 2 children (home births!) and has a career as a speech therapist. She also owns/operates a family sheep farm. She says she doesn't even think about MG anymore as it's been gone for over 30 years! She hasn't seen a neuro in over 25 years!

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. Everyone is so different, and we all deal in our own ways.

Hi Roger,

I am impressed by how fast you adjusted to this illness in such a short time period. It took me much-much longer to reach a similar level of understanding.

I believe this has a lot to do with it.

I hope you do reach your long term goal. But, I am sure that even if you don't you will find other important goals and will achieve them.

It's not a matter of snapshot view. A pulmonologist has a snapshot view too.
It's (as I explained earlier) looking at the right thing or not.

My pulmonologist looked at my endurance (after he realized my respiratory tests were all over the place), whereas the neurologist looked at my momentary strength.

Ironically, the endurance test was done because a neurologist who recommended checking my lactate level during exercise (due to a false positive result on another test), and my pulmonologist said that in that case we will do a more elaborate test which will give us more answers than just the lactate levels. (which were the only parameter which was completely normal in my tests!).

The other respiratory test was done because a neurologist told me with confidence that I require respiratory support because it provides psychological relief. I told him that I am fine with that, but would like to have a more accurate assessment of my respiratory status before I seek psychotherapy to help me get over this ridiculous need.

Upon receiving the results of the respiratory tests he told me that I have a rare form of MG (he himself nearly missed) with significant respiratory muscle involvement and that he fully agrees with the pulmonologist that I should keep on using my respirator.

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).

That sounds like a lot of people….

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 :)

So very true!

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.

I think I know who is dishing out all those remissions!!!!!!


It is either this guy......


Or this one......

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

Having a lie in…....:Zzzz:

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

Trying to win the Grand National....:deadhorsebeat:

Doing a spot of fencing......:mf_swordfight:

Learning how to sail......:Sinking:

Learning to tightrope walk.......:Oops:

Maybe even learning to do the salsa.......:Dancing-Chilli:

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

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

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


Because:

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

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


:wink:

Don't be so cynical :rolleyes:

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?

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 :)


Anacrusis

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.

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.


Anacrusis

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!

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
Alan :)

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.

I don't know if THIS might be a factor.................

My MG doc also works at the MDA clinic AND treats ALS patients. I LOVE this doc -- he has been mighty kind to me.

BUT, if I "compare" myself to the other non-MG patients he sees, I would have to admit that my problems/symptoms seem "mild". I have sat in his waiting room...........other patients in wheelchairs, with walkers, hooked up to oxygen, not able to hold their heads up.........makes ME count my blessings! I REMIND myself all the time -- MGers are probably the most "normal" patients my doc sees.

My headache neuro sees a LOT of stroke and MS patients. In comparison, I probably look/seem pretty healthy to him, too.

When someone talks about "normal" -- I AM able to walk, feed myself, dress myself, breathe "regular" air, sleep in a regular bed....actions that MS, MD, ALS often don't allow. Perhaps a doctor's definition of living a "normal life" considers these things. :confused:

Hi Alan,

I SO understand about the travel and not knowing and not being able to plan. At my worst a few years ago I couldn´t even have flown with the help of a wheelchair. I do so hope you will get to Australia to see your daughter get married. Just with a doctor´s clearance.
I was afraid of flying long haul but actually had some respiratory problems on the short flight prior - but strangely enough nothing on the long haul flight and not since returning either. Some non-friendly MG drugs used to exacerbate my breathing so I had some issues from before flying anyway.

Thanks again for your thread. I wasn´t quite expecting to get so into it!!! Look forward to hear how it goes with you in the future.

Today I am Mestinon and symptom free for 10 days. Although I´ve learned my muscles do not need any colossal work outs right now I have also noticed that for the first time in many years the question for the day is not:

Do I have enough strength?

But rather:

Do I have enough time?

I do still plan to go to an´MG´friendly pulmonologist that has kindly been recommended to me by someone on the forum. And to a neuro appointment postponed 6 months because of a negative SFEMG.

Have a lovely day :)

Anacrusis

As a rule I never compare myself (or other people) to others.

― Max Ehrmann, Desiderata: A Poem for a Way of Life

http://www.goodreads.com/author/show/177071.Max_Ehrmann

Huh??????? My brain must be even WORSE than I realized! I always thought this quote was talking about comparing net worth/achievements/abilities/physical beauty.......comparisons that I, too, am loathe to make.

BUT, comparing myself/my illness TO someone who is in much worse shape...............well, let me just say that this has stopped many a "pity party" AND brought me to my knees in prayer for those less fortunate.

I know I'm probably just silly -- but, if God gave me a list of all of the autoimmunes and said I HAD to pick one. I'd probably choose MG.

No offense meant -- and, hopefully, none taken. :)

Alice, are you able to say any more about this slow remission?

I am not sure how accurate my memory is, but I can try. What would you like to know?

I don't think I would. Definitely not a rare variant of it, which is hard to diagnose and treat. Not one which involves recurrent episodes of respiratory failure, which are repeatedly ignored until you nearly die. Not one which is basically met with disbelief. Not one which requires consulting numerous physicians and scientists around the world until you get the kind of care you require. Not one in which you are sent home to die. Not one in which you are left to fend for yourself for nearly a year in which you have nearly daily struggles to stay alive...
But, as I was not given that choice, I just have to make the best of the cards I was dealt. I am definitely not going to feel sorry for myself, nor stop having compassion for others.

Yes....

For example:

1) Going back a bit. Which was your first symptom that you noticed when you got MG first time round?

2) Which was your first symptom/muscle set to remiss? Or did all remiss gradually together?

3) You talk about general and gradual increase of energy for specific tasks during your remission.
Does anything in your memory remind you that there were still flare ups along the way before complete remission?
Or do you just remember it as one slow and gradual energy increase?

4) If you remember flare ups, did they get shorter in duration or less frequent?

5) Was remission predictable in that you were sure of its direction during the length of that year?

6) When did you realize it was actually true remission?

7) How do you´diagnose´a true remission?

8) In the years after remission, were there ever moments where you had any brief epsiodes of myasthenic weakness?

9) What did other´s around you think?

10) Someone might ask do you think any of the following aided or propelled your remission?
Medications, workload, rest, nutrition, stress levels etc etc.


Otherwise, is there anything else you remember about it that you would want to share?


Anacrusis

Hi Jana –

Talking of ´normal´ but in a different setting I thought you might enjoy this little paragraph - I stumbled upon this and thought it precious in some ways - especially the last sentence….

´Sarah of Washington wrote: “I’m really confused by the fact that these young women didn’t realize they were weak even though one couldn’t do more than one sit-up and the other couldn’t lift a gallon of milk.” Many readers felt equally bewildered. But Anon from New York wrote about the perceptions of those with chronic diseases: “When you live with your own ‘normal’ (which may be wholly abnormal), you take for granted everyone else feels that way, too. . . . If it is all you have ever known, you can see why it would be something a patient might not mention.” For the parents, it would have taken an enormous leap to imagine that their seemingly healthy daughters could have something seriously wrong with them. Often, what we see in our children defines our understanding of normal. This family, like many who live with chronic diseases, have come to understand that there are at least two kinds of normal — one for them and one for everyone else.´

From here:

http://www.nytimes.com/2011/04/10/ma...agnosis-t.html

Have a cool day :cool:

Anacrusis

WOW!! How profound! This type of logical thinking just fascinates me! I'm telling you, I learn something new everyday!! Thanks, Anacrusis!

Great article, too. Pompes?!?!?!?! Gonna have to remember that one!!

Yep -- having a "cool" day here in Tennessee. Actually rather "brisk" -- brrrrrr. (I know that you didn't mean "cool" literally -- but, I couldn't resist.) :) I hate the cold and am sitting next to a sunny window.

Again, thanks for sharing!!