I guess I need to say that I have found information provided by both Alice and Annie to be extremely helpful and I do appreciate all both of you have done to help me better understand MG. Annie, I did not intend to imply that you called me foolish it is honestly something I bring on myself because I wonder at times if I am refusing to see the bigger picture. Will I be biting off more than I can chew? I have conceded to myself that I may not be able to do this and I make that clear. But I am do need to at very least try and if it is not to be I will then not be afraid to say you are correct and reevaluate where to from here.

I agree with Alice about the mental adjustment and perhaps I will learn the hard way. I have over come so much to get to a point where I have fought my body to complete endurance events including two years ago when I finished a half marathon followed by a marathon the day after. That I think is where my current mind frame leaves me. I am refusing to accept I can't and I'm trying to convince my mind and body I can! As I have said above in the end perhaps I can't but I am still going to try.

I am new to MG and I consider myself lucky in some ways. I was diagnosed so quickly in part because I was sliding downhill so fast. I went from finishing a half marathon on September 6nd to double vision and having little to no strength in my arms, hands and legs in less than a month. By October 1st I had my first plasmaperesis and I remember that night laying in bed and being afraid to fall asleep because my breathing was just not right.

I was lucky to find this group and I was also lucky to find a good neuro who seems to both know what he is dealing with but also listens to me and my questions. Let me add the people here have been wonderful in helping me be prepared to ask those questions and I owe a great deal of thanks to many of you for that.

I honestly can say I was disenheartened when reading the responses and came close to not coming back. While I know your responses are well intended I feel they dash the hopes and dreams of some who still think we can get beyond our diagnosises and get back to a somewhat normal lifestyle. As you both have said MG effects all of us differently and some people do go into remission and some can get back to life as they previously knew it.

I will continue to come back and I do value the information here. I do thank both of you for sharing your knowledge. In my case however I hope I can prove you wrong and find normal again.

I hope you can understand where I am coming from and see this from my point of view.

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.

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...thatīs a good point. In my own case it feels like that is almost impossible - But Iīm 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.

Oh! A surprise message of support just when I needed it most but least expected it! THANKS SoftTalker Sue

Thanks also for sharing your experiences with docs - Sounds like the second doc needs a class set of those books you mentioned about in the reading thread!

Thanks! I'm trying. I hope I'm answering correctly here. It's new and confusing.

You are doing great elinora.

Welcome to the "Group".

SoftTalker Sue

I have done loads of thinking on all of this and have decided after last nights 2 mile run (which turned into more walking than running) that I am going to defer my January marathon at Disney and instead put the credit for the entry fee toward the Disneyland Half Marathon in September. While I am seeing progress I have to think more long term and have to accept that progress will be slow in coming. Being stubborn and impatient will likely only lead me down a road to failure and risk undoing the progress I have made.

I apologize if I came off as a bit of a jerk here. My long term goal is still to get back to life as it was before MG and I think in time I can do that.

I will still make the trip to Disney in January as a spectator to cheer on my wife and daughter and spend time with all the friends that I have met through running over the years. There will be other races but first I need to try and heal at a slow and hopefully steady pace.

Thanks for all your advice. You all have helped me learn so much and it has been great to go to the Docs with knowledge in advance of my appointments.

You were not being a jerk. This is a really frustrating thing to be going through. We are in the same boat. I feel like my life is being stolen by this thing and I believe that the rest of us do as well. The treatments working to help us get our lives back.

It's really difficult, and you had to sort through things in your own way. One reads a lot of information and draws up plans in one's mind based on that info, but then one finds out how little MG concerns itself with plans. I don't know one runner who would do well with dealing with this. I am not. Have hope, though. I was unable to run a mile this summer, but now on 40 mg of prednisone, running is coming back. I have done two long runs, albeit at an excruciatingly slow pace. Don't give up!

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