Roger, I really, really do see where you are coming from. You want to be able to do the things that you want to do. I feel the same way.

I am still riding my horse. If I get weak and get killed from it, oh well..... Riding my horse is a major part of defining who I am. I also plan to exert myself singing a concert tomorrow night. If I feel like crap for a week, oh well......... It probably won't kill me.

Keep on keeping on. Just be aware that you may have to modify some things. I make sure to take my mestinon before exerting myself because it is too late afterwards. The drugs do help. If they don't, then they are a waste of time and money.

About riding my horse; I can't really feel confident jumping competitively. I do enjoy trail riding. Maybe if you find that you can't compete well at running, you could enjoy hiking.

You will not prove me wrong.
I never thought or said that patients with MG can't have a full and long lasting remission. I don't think that what is written in the medical text-books is wrong. I just think that unfortunately it does not apply to all the patients.

What I said was that you have to give your body time to heal. This is the part which up to you.
This is also the place where I think that the lack of understanding of this illness by many neurologists can be so damaging.
No doubt that they have the best intentions when they encourage their patients to go back to their normal life as soon as possible, but I believe that for some this may be very counterproductive and have a negative effect on their chance to fully recover.

My husband is a marathon runner and one of my physicians was a marathon trainer. I have learned from both of them that a trained marathon runner never pushes himself beyond 70% of his maximal ability.

You also don't run a marathon every day.

I have seen marathon runners who were not properly trained and the significant difference between the way they run and their chance of getting into trouble as compared to those who are properly trained.

Those rules of thumb apply very well to MG.

I am sure that if you had a cardiorespiratory test prior to MG your VO2 max would have been very different than what it is now.

I am also sure that you gradually built up your endurance level and not started running the full 42 kilometers right away.

I am sure that you are aware of the fate of the first marathon runner.

http://www.2500marathonanniversary.com/history.aspx

rogerm213, Is your name Roger?

Studies have shown that it's the newly diagnosed or the undiagnosed MG patients who often go into an MG crisis in approximately the first year because no one is willing to give them cold, hard facts about MG. I've been in one and wouldn't want anyone to go through it. Doctors often give that line that "You can live a normal life with MG," and then patients think they ALL can do that.

The other issue is the "plasticity" of MG. It tends not to be. The brain, for example, is very plastic and by that I mean that it is capable of learning and relearning. It's "flexible."

With MG, however, the more you push, the worse you get. The worse you get, the longer it takes to recover. For example, it took a MONTH for me to get out of bed after my crisis (2005) to do anything. Four months after my crisis, I socialized with family who were in town and I had an exacerbation, which is not quite a crisis. I can go do errands now and only need to rest for a much shorter time, like an hour.

And you are not only pushing MG but your immune system too. Once the immune system goes awry, it tends to go southward in other ways as well. Many of us have more than one disease. I have celiac disease, asthma and allergies. Some have thyroid diseases or pernicious anemia. So pampering your immune system, not only your MG, is a very good move (i.e., getting enough sleep).

I'm sorry if you were put off by anything I, or others, have said here. Being realistic about MG does not equate to taking hope away. There's always hope. Our honest discussions here do not preclude hope. On the contrary, they give us the skills to combat this illness the best way we can. And you absolutely need knowledge to do that. MG has a big learning curve.

I hate quoting statistics because I honestly don't believe they're accurate, since they've historically been done on small groups of MGers. The old adage was that 1/3 get better, 1/3 stay the same and 1/3 get worse. I think that's BS. ;) And I think "they" need to take a fresh look at MG and its patients.

I'm sure you must know, being a runner, that you can't sweat out sodium and then intake too much water or you'll be open to having hyponatremia (low sodium). If it happens quickly, like with binge drinking alcohol, you can die. Knowing that does not stop anyone from running but it gives them knowledge to best take care of themselves, right?

MG is more stubborn than my Norwegian ancestors. It'll do what it wants whenever it wants to do it. So when you do decide that you'll do whatever you want whenever you want to do it, just know that your MG "partner" may have other ideas.

You do go through a grieving process when you get any disease. What I have had to give up in my life has just about killed me. And the financial strain is impossible to deal with most days. You really have to fine tune existing coping skills or get new ones to deal with a disease and what it can "take" from you. That does not mean, however, that you can't have a good life. But it'll probably be a new "normal" that is harder for you and your family/friends to adjust to.

We are all here to support everyone in the best way we know how to. We all bring different skills to the discussion and that's what makes it so interesting here. And we RESPECT each other. So, please, feel free to share anything and do say what you just said about feeling a loss of hope. I don't speak for everyone here but let me say from my heart that I welcome what you have to offer.

Human beings haven't even begun to tap the potential for healing within themselves and there is ALWAYS hope.

Annie

Annie, you wrote something in a post a long time ago about, once you get an autoimmune illness you always have it. Does my memory serve me correctly? I remember thinking....how come I didn´t know that? But, if this is true then it really changes my thinking about the bigger picture of things and guides my own tempo of activity into a much healthier perspective. :)

Anacrusis

Roger, I completely understand. Runners run. And MG is heartbreaking. I had many flares before I was diagnosed but mostly recovered and continued endurance training. This autumn, though, I was a spectator at my hometown marathon, and I have given up being ready for a December Marathon that I had selected for its cool weather. I am registered for Boston, which I have never run, and hope to be able to run it. I feel it is my responsibility to know when my goals truly are unrealistic but that it is the physician's responsibility to adjust his or her definition of normal health according to each patient, even if there is a chance of only partial success. It is difficult. I am sorry. Like you, I want to run.

Elinora, Good Luck making Boston happen. I will never be fast enough for Boston but I usually go down and watch it. I hope next year is a bit cooler than this past year was. Even the most well trained athletes struggled in the heat in 2012.

I think a lot of this boils down to perspective. There's obvious risks to a lot of activities if you have MG and how far you're willing to push your body and push your limits is up to each individual. Some perfectly healthy people like to jump out of planes. Regardless of anything else, they take a calculated risk each and every time they jump out of that plane that their parachute will open without fail. But when you're doing something you love to do, sometimes you accept the risk that comes with doing it. And sometimes, that risk isn't worth it. It's all about the individual's perception, reaction and acceptance of the level of risk. Me? I'll listen to my body, like I always have when running. If I'm having a bad day, I'm not about to push my body harder or further and damage myself more. But if I'm feeling good, then I might be more willing to take risks with it. Will other people understand that perspective? Maybe, maybe not. But it works for me and my life, and that's all that matters to me.

And to answer your question rogerm123, I completed my three leg (4.7, 4.5 and 7.0) without any trouble, at least not associated with MG. In fact, health-wise, I felt no different during the race than I did during my previous races. Despite the fatigue, the cold, the snow, the freezing rain, the seemingly gale-force headwinds and the stress that all of that plus running 16 miles puts on your body, I felt better than I have in quite a while. Although my legs are just a bit sore this morning... :)

Glad to hear the race went well Adam. As for jumping out of a plane I think I will pass on that one for now! :D

Hi elinora...that´s a good point. In my own case it feels like that is almost impossible - But I´m still working on finding one who does exactly that :) .....Anacrusis

Originally Posted by elinora

......it is the physician's responsibility to adjust his or her definition of normal health according to each patient

BRAVO elinora - to me, this is the sign of a good physician. I just don't know how many of these type of doctors are out there.


Originally Posted by Anacrusis

Hi elinora...that´s a good point. In my own case it feels like that is almost impossible - But I´m still working on finding one who does exactly that .....Anacrusis



Anacrusis

I sincerely hope you will soon be able to find the doctor that is the best for you and your health needs. I am very grateful for my current neuro - and - I do believe that he is still learning about MG via verfiable medical information and my "subjective updates" regarding my health/life with myasthenia gravis. My neuro is a "generalist" neurologist (does not assert to be a specialist in any neurological area).

Before I became this doctor's patient, I was seeing a neurologist who lists MG as one of his "specialties". His rigid approach and expectations from his medical treatment was (to me) at times, perplexing. Upon leaving an appointment one day I was approached by another patient who expressed this same observation. An MG crisis (while under this specialist's care) and subsequent hospitalizaton in a hospital - which he did not have attending privileges to - is what generated my transition from one neurologist to another.

Hang in there, when the time is right, I believe you will find the right physician.