It just occurred to me -- it must sometimes seem like I (perhaps we?) give conflicting "signals" to newbies.

Sometimes, I tell newbies that MG isn't ALL that bad.

Sometimes, I tell newbies that MG is MUCH more serious than they realize.

So.........MG is a "tightrope".......a fine line between being nonchalant and being anxiety-ridden over our condition.

When I say that MG isn't all that bad, I am trying, in part, to get a "newbie" to calm down. Anxiety does us NO FAVORS! But, as I have ALSO said in other threads, I had rather have MG than cancer, ALS, Alzheimers, and quite a few other conditions. So, in my opinion, compared to some other things, "not so bad".

When I say that MG is serious, I am trying, usually, to get a "newbie" to realize that MG CAN knock you clear off of your feet. Thanks to "modern medicine", the mortality rate has gone down, but intubation is still a distinct possibility.

It is hard -- we can't be too indifferent -- or too uptight. Like Goldilocks and the Three Bears -- we have to find the bed and the porridge that is JUST RIGHT!

I don't know -- is this making any sense?

Jana, I don't think it's just newbies that we tell these things to--I think it's to ourselves, too!

I'm just making it up as I go along.

Abby

*head spinning*

Abby, I think you may be RIGHT!!

And, I think I see how my friends and family get confused, sometimes -- on Monday I might still act like "Super Woman" (or Wonder Woman, as Mike calls his sister) MG isn't that bad -- and on Tuesday, even though I "look" the same, I act and complain that I'm falling apart -- MG is SERIOUS.

I think I need your last statement as my "siggy". "I'm just making it up as I go along."

Thank you for this thread.

Sometimes I feel like I am going crazy, as I contradict myself more than I'd like to. I have been feeling guilty about my inconsistancies.

The only thing that seems to work is to live in the moment. Every day is an adventure.

Here's my perspective. I was diagnosed just over a year ago, I'm still a relative newbie as far as I'm concerned.

I do not want to hear it isn't that bad. That is the most invalidating thing I have ever heard. When I was first diagnosed, I read up a little bit and cried my freaking eyes out. Then I read and heard, it's not that bad, you can live a full quality of life, etc. I'd already been sick with Chronic Lyme disease for 6 years so that certainly plays a part for me. I thought, this is my answer! I'm going to take this Mestinon and be all better.

Well I've gotten so much worse in the last year, and it's completely different symptoms than anything I have had from the Lyme. (Don't take this next line to heart or personally.) I'm damned ****** at anyone who has ever written in the literature or yesterday that this is not that bad. This freaking sucks. Personally my life is ruined. I'm bedridden, I can't even pick up my cat anymore or my dinner plate, I can't shower alone, I walk like a drunk, I'm in severe pain if I do decide to push myself, if I decide to walk on the wild side and say...oh...TALK a while, I can't breathe well for hours.

When I see anyone say it's not that bad, it could be ALS or Cancer, I want to scream. At least if I had ALS I would know what my end point might be and I could choose to live my life a certain way. This crap just goes on and on. Half of cancer is now curable. Let me tell you, I go to a Cancer Center for my IVIG tranfusions every other week and generally I am the sickest patient there. One of the Cancer Pt's WIVES knit ME a blanket she felt so bad for me. I look worse off than any of them!

I'm mad that I was misled. My neurologist told me straight up, you will always be sick. Your life will never be the same. You will not be able to do things you could do before. I thought to myself, okay. I can deal with the truth SO MUCH MORE than I can deal with false hope.

That's my two cents. Had I known this year was going to go like this, I would have BEEN PREPARED. But no. I spent last summer swimming and swimming and swimming because I was told EXERCISE AS MUCH AS YOU CAN every day by my doctor and I damn near killed myself every day. Vicodin every night. I'm no better, I'm worse. I can swim, lift 10 pound weights every day, and still my arms just get weaker and weaker.

You know the most embarrassing thing? When someone has a baby and tries to hand it to you and you have to think of how to get out of it despite your heart is aching to hold your friend's baby, because you are afraid you might drop it.

Tell it like it is. Please.

Unfortunately, the nature of the disease is that it is different for each of us and different day-to-day.

There are lots of us who're wheelchair bound (I've never been that bad personally, but I did spend almost 2 months in hosp with an exacerbation). There are lots of us who can go out and spend a week skiing with family and friends (Christmas week at Mt. Tremblant was a ton of fun for me, even though I had to limit my skiing to 1/2 days).

The nasty truth is, it is a horrible condition *and* it isn't too bad... all at the same time. We each have a certain number of "credits" to work with in the run of a day... the trick is to spend them wisely and realize when we're running low on them.

Tracy,

I do agree with you. I'm still upset with my neuro who tells me to take more medicine, that I can live a normal life...yeah, right.

While I am not bedridden right now, I was...and now I've learned to pace myself. I sit here at my desk and I rest in a bed a lot, often for a whole week before doing any activity, and most activities are out of the question. The "activities" I am talking about are going grocery shopping and going to doctor appointments, everything else other than sitting here on my computer is pretty much not possible.

And I'm dirt poor because I can't work. Yeah, right, it isn't that bad. I've been down the road of depression because my life is pretty much over, and I'm trying to figure out what to do with it, that is when I'm not wondering when my savings account will run out and I have to figure out where to live and how to eat. And when I start worrying about the future I crash and can't function...so I've learned to live in the moment, I'll deal with tomorrow when it comes, I don't know what else to do.

I do agree, hearing someone say "it's not that bad" when I am struggling is very invalidating. I've had a few days where I think to myself that I can deal with my condition, but those days are very few and I soon change my mind. I'm still waiting, after 2 years, for my neuro's words to come true, for me to be able to live some sort of normal life...but I can't see that happening if I sit here resting all the time, and I don't have enough energy to learn something new, or go out looking for a job I might be able to do.

It is bad, I wouldn't wish MG on anyone.

And I do think it is better to know that MG is serious and to take care of ourself, to try to relax as much as possible and avoid stress or whatever makes our symptoms worse. The hardest part for me is everyone around me thinking I need to just get up and do things.

I did the same as you...my neuro told me I could live a normal life so I kept trying to work and do regular things and I spiralled down until now I am so sensitive to everything that I have to limit every activity just to be able to walk around the house and take care of myself. I wonder know if I had rested initially if it would have helped...too late now.

I might be saying it isn't too bad if I had someone to take care of me when I need it...so I guess it is up to each of us to decide how bad it is. For me, it is bad, the worst thing that has ever happened to me...

One of the problems with saying that MG is not so bad, is that this is the impression given to others.
If those who suffer from MG think it is not too bad, than obviously it isn't.
So, why should we invest in finding better treatments for it, why should we try to do what we can to improve patient's lives?
If neurologists have the impression that this is a "nice" disease and their patients agree with it, then all is well.
And if you specifically, don't feel that way about MG, then something is wrong with you.
Let's all live in this "heaven of fools" convince ourselves that this illness is really fun and nice to have. Say thank you every day that we don't have something worse. Receive lousy treatment, fight for what patients with other disease can easily get. Accept the fact that our respiratory symptoms will be properly recognized and managed at the most half of the time (if we are lucky). And most importantly always be "positive" about it all.

Go to http://clinicaltrials.gov/ct2/result...avis&recr=Open where every clinical study in the world is registered and look at how many on-going clinical trials for MG there are- 14!
now look at chronic lymphoctyic leukemia http://clinicaltrials.gov/ct2/result...emia&recr=Open and you will see that there are 438 on-going trials.

why is that? because chronic lymphocytic leukemia is a serious illness, which affects mostly patients over the age of 60, some of who have a very indolent course that can take years. But, their physicians want to find better treatments so that all will be cured or at least achieve a long remission. I myself have spent over 10 years working in the lab, trying to gain a better understanding of this illness and developing better treatment approaches.

On the other hand, myasthenia is a nice illness, that affects mostly young people, disrupting their personal lives and careers. But, they all lead a normal life. Some of them end up spending long periods in the ICU, requiring respiratory support, some of them are wheel-chair bound. But, it is obviously their fault, because as we all know this is not a serious illness and not one that you can actually die from.

I think it is time to say the truth and start fighting for the treatment and support that we require. We may not have ALS, but we may have times in which our condition is like that of a patient with end-stage ALS. and then we recover (at least partially) and have to readjust to our " normal" life again, until the next time (which is quite unpredictable) in which we will find ourselves bed-bound again. Having to postpone important meetings, and appearing unreliable.

MG is a horrible illness. Yes, you can live with it. Yes, you can adjust to it. Yes, you can still lead a productive life with it. Yes, you can have many times of joy and happiness. Yes, you can still have significant achievements. But, you can also do so with cancer and even with ALS (see Steven Hawking).
with much more support from your physicians and the society.

Some patients will have complete remission, but so will some patients with cancer.
Many types of cancer, which had no effective treatment in the past, are now curable. Even patients who do not respond to initial treatment can have second or third line treatment to which they will respond. The amount of research in cancer is enormous. Patients with cancer have realistic hope that new treatments will be found in their life-time.

This is not so for MG. There are very limited treatment options. And if you don't respond to them, you can only receive symptomatic treatment and supportive care.

Those are the answers I received ( a few years ago) from a leading expert who was involved in my care, when I started to realize that I have severe refractory MG that doesn't respond to currently used treatments:

So, the severity of MG is not objective (like the severity of chronic lymphoctyic leukemia), but depends on how the patient sees it. And obviously there is something wrong with a patient that sees his/her illness as severe.

And when a patient (who is also a physician who has seen the enormous progress in her field of practice) dares to hope for the development of better treatments she is ridiculed for that.

Like as not, money does make the world turn. If the pharma companies thought there would be big bucks in pursuing new drugs for MG, they would. Instead they focus their efforts on illnesses that in their ECONOMIC judgement are more apt to return a substantial profit for their investment of time and money.

Unfortunately, 'nerve and brain' medicine has not made the same strides as other body parts and functions (organs, hormones, blood, bones, skin, etc.) for this very reason.

And what I find very odd...insurance companies do not want to underwrite MG (so without corporate coverage we end up in high risk insurance pools with extraordinary premiums) while docs pretend that MG really isn't all that bad.

Once again, economics!! The cure may not be cost effective...but the disease is not cost effective either.

It is extremely important for newbies to know that MG can be life-threatening. They need to know that they can tank really fast, and that any trouble breathing or sudden increased weakness means that they'd better go to the ER or call an ambulance.

We have some people on this board who have really severe MG: refractory MG, MG that causes respiratory distress, MG that requires multiple hospitalizations, and MG that causes debilitating double vision, to name just a few. It is good for newbies to read posts from these people so that they know what they're up against--so that they don't accept the "MG is not so bad, so if you're suffering it must be your fault" attitude from their doctors, and from the people in their lives. Their suffering needs to be acknowledged as real.

At the same time, newbies need to know that they are not necessarily doomed to having refractory MG that makes them completely disabled and interferes drastically with their lives. Sometimes MG is like this, and sometimes it isn't. Some MG patients' disease responds well to treatment.

When I got my diagnosis, I was so relieved. I was relieved because now I could receive treatment; because now I didn't have to fear being tagged as a psych case; and because it meant that I didn't have ALS. There was no chance that I was going to be told I had something better than MG--of all the reasonable diagnoses, MG was the least bad. So, that was a happy day. Most of all, I was glad to leave the anxiety of not knowing what was wrong behind me. Those are real, legitimate feelings too. The diagnosis gave me hope. Not all hope is false hope.

My daughter, who's fine now, was born with a heart defect that went undiagnosed until she was eight months old. When I finally got her to a cardiologist, the doctor did an EKG and told me she had one of two defects. The first could only be treated with a heart transplant, which would give her five more years of life. The second could be completely fixed with open-heart surgery. The doctor did the echo: good news!!! She only needs open-heart surgery!!! Imagine being so happy to hear that your baby needs open-heart surgery. My happiness wasn't false optimism, or any sort of fake sunshine.

I'm not disagreeing with anything anyone has said in this thread. I'm just adding some emphasis to the other side of the coin. Maybe what I'm saying is that no one has the right to tell you "what you have isn't so bad." And no one has the duty to try to force themselves to believe that "what I have isn't so bad." But, sometimes, the feeling that "what I have isn't so bad"--if it comes naturally, from the inside, and isn't forced--can be embraced.

Abby