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.

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

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!!