You're right on that, Deb. Attitude is very important. I'm sorry you are in a scooter (is that right?). Nope, that's not pity either. It's just sad that your MG is so bad.

There are times, however, when life and diseases are just too overwhelming. And having a disease includes all those lovely phases of grief, including anger. I think we have to allow ourselves to go through whatever phase we need to in order to heal, physically, emotionally, spiritually, economically . . .

I think I'm in the "exhaustion" phase, even though that isn't one of them. Too much doctoring, too little power over my life, too little of everything. Nope, not a pity party, just exhausted.

Annie

Hi Annie and all,

I think that's an excellent topic.

a few years ago, I had a patient with refractory leukemia, which means that there was no more treatment me or any one else in the world could give him, to get him into remission, after his second relapse.

I came to see him with our fellow, and when we walked out of his room, the fellow asked me-how could you talk to him like that? why did you tell him that there is no more effective treatment you could give him, why didn't you just give him some mild chemotherapy pills, that would keep him stable for a while, and not tell him this?

but, I knew my patient, I have been taking care of him for almost 3 years, and I knew that he is someone that wants to know the truth, and also I promised him that I am going to do every thing possible so that he can have the best quality of life.

he lived for another six months, in which he went on trips with his family, ate in the resteraunts he loved, and overall had a very reasonable quality of life. when he died his wife thanked me and said that until the very last day of his life, he kept on being the same person he always was.

I gave him mild treatment that kept his blood counts reasonably stable, blood transfusions as needed, minimized the time he spent in the hospital each time he had an infection that required IV antibiotics, and encouraged him to use what ever he felt could make him feel better, physically and emotionally.

I was also there for him and his family in the inevitable times of despair, and I constantly checked the NIH site, and with colleagues regarding any possible experimental treatment that would be available.

medicine with all its advances has its limitations, and even if a patient is given the best possible treatment, it does not gurantee remission. some patients, like myself, just don't respond to the "miracles" of modern medicine.

and yes, having to use a wheel chair is not the end of the world.
although, it does take a period of adjustment, (for me it took way too long, and a very knowledgable and experienced neurologist, who just said it to me, as if it was obvious- why don't you just use a wheelchair if it's hard for you to walk? and thanks to him- I was able to see more then one picture in a musuem for the first time in three years!)


yesterday, one of my patient's grandsons, a cute 5 year old, saw me in my wheel chair, and stared at me. his mother, who felt uneasy said to me- oh, he just doesn't like white coats. so, I said to him- that's fine, I'll make sure that next time you come I have a pink coat instead, would that be OK?

so after, we "broke the ice" ,he asked me-why, if you are a doctor, you are sitting in a chair like this? reasonable question, no doubt. doctors are supposed to be healthy, and patients are the ones that use wheelchairs.

so, we had a long discussion about wheels, and how they help us get to places that are too far for us to walk, and how for some people "too far" is different then for others.

and then he agreed to let me take care of his gradfather to make him stronger and able to play with him again.

and yes, you are completely right Annie, sometimes we tend to forget what are the tools and what are the goals.

remission is a tool for a longer life, and a better quality of life. it is not a goal in itself. and some can have a very good remission and still a pretty lousy quality of life, due to intolerable side effects, or inability to adjust to the relatively minor symptoms that they still have, or other reasons, and others, may have a pretty reasonable quality of life, even though they are not in remission.

and I am sorry to hear that you are in the "exuhsted phase". there definitely is a phase like that. I have seen it many times and have also experienced it myself.

but, what I say to myself in those times is 1. even a well-trained army needs some time to rest in between battles, 2. you can't run a marathon every day (this is something that one of my pulmonologists, who is also a marathon trainer said to me once, and I really liked it), 3. a person who was able to climb out of a dungeon is equipped to be a mountain climber.

and I alway manage to find some new hope, after the previous one was violently shattered, by one of the less sensitive, or more arrogant members of my profession, or even by the reality of life itself.

a year ago, I was quite sure that I will never be able to go back to the work that I love. and now, I am about to go to present the results of my collaborative research in a conference abroad, even though I am not in remission and not even near it.

so yes, there is always some hope out there.

alice

I think this is a good topic Annie. And thanks to everyone who has already posted, some real food for thought.

When I first got ill nearly three years ago, though looking back it was probably far longer ago than that, I dreamed of remission. I thought as the medical profession and the MGA literature all said that most people with MG lead a normal life all I would have to do was take these magic pills (mestinon) every 4 hours and eventually it would all go away and life would return to norrmal.

Now I dream for a better quality of life, remission to me at the moment seems like asking for the moon. To be able to walk my dogs, just for 15 mins, or to go out with friends to the cinema or for a meal or even just to be able to do something other than sit in a chair and watch the world go by, would be better than what I have now.

I know all drugs have risks, I know prednislone isn't good for you in the long term. But given the opportunity to try these drugs and get some more quality of life would be better than not trying at all.

Remission is what everyone hopes for, in reality for me what I hope for is a life that contributes and is rewarding. Two things I have in little quantity at the moment.

Love
Rach

Thanks so much, Annie, for posting this topic and for the links. Thanks to everyone for all your thoughts. I want to learn as much as I can about this disease and everything surrounding it so I can make education decisions about my care. This forum has helped educate me more than anything else I've found since I was diagnosed in 2006.

I don't know why, but remission seems to be outside my realm of possibilities in my mind. My dream would be able to walk through the mall or the grocery store like a normal person. That seems like such a long time ago. Oh, and to be able to go through one entire day feeling pretty good and able to breathe all day.

I look back to nearly 7 years ago, and I have come a long way.
But I do dream that one day I will be better, I think the thing I find hardest is that all the medications I take and have taken make me so sick. I constantly fight diarrhoea and nausea and sometimes vomiting. I think it would be soooo much easier to cope if I had some degree of wellness, but I guess I would be so much sicker with mg if I wasn't on the meds. My poor neuro is constantly trying to manage my medications, and he's said I am frustrating in this respect, he doesn't mean this in a nasty way, just wishes I would respond "normally"

Redtail,

you are right, the side effects that come as a "package deal" with our effective meds. are really very frustrating for physicians and patients alike.

as to books, they used to be my best friends (never had a dog), but it's been a while since I have been able to read books for pleasure.
it's now quite a task for me to read. although I never gave it up, but can't just crawl in bed with a book, like I used to.

and I assume it is true that it is too dark to read inside a dog (although never really tried it) but possibly you could using a flashlight?

I used to do that when I was a kid and didn't want my parents to "catch" me still reading ( I was a real book worm) in the middle of the night, so I would hide under the covers and use a flashlight to read, and it really worked well.

alice

HI Alice

I don't read as much as I use to, I found myself working out how to lie down in bed on my side, book resting on a pillow, just so I could read, but this to is exhausting!!
I guess I could loan talking books from the library but that is just not the same.
Kate

Hey Annie,

You may remember me as JimInTX. Very good post! I have also been one of the lucky few to have had a drug free remission. It lasted slightly under a year and I was thankful for every day of it. To review: I had a thymectomy with the removal of a thymoma about 11 years ago. Mestinon, imuran and prednisone are my drug cocktail of choice. I’m currently beefing up the imuran in order to decrease the prednisone and all of its side effects. My symptoms are usually bulbar.

Sure, I’d love to have another remission, but I know that it won’t remove the damage already caused by prednisone. My current goal is to get this recent flair-up under control so that I can hit the job market again. I’d be happy with a job, a little imuran, and a beer to wash it all down with.

Jim

Rach, You might have a shot at remission or a better quality of life if you could get a better quality of doctor!

Shar, Keep that dream alive anyway. Who knows, maybe after hormones die off, you will feel better. Or not. You never know what the body can do. If people can use meditation, etc. to keep cancer away maybe we can use our brains to make MG better.

Alice, I can't read anymore either. Too hard to hold a book.

Kate, I'm sorry you are having so many side effects. Why does it have to be a trade-off?! And there is no "normal" with MG. Haven't the neuros figured that out yet? Geez, they see that one bizarre and grotesque photo in one of their medical books, read those few paragraph about MG and think they understand the disease.

Jim, Of course I remember you! Sorry it took so long to get back - I didn't go back and read the post. I'd like a beer too. MG and celiac make that impossible. And a job. A date would be nice too. Or anything else resembling a normal existence. I'm glad you are doing relatively good though. Glad you're not in the heat of Texas anymore.

The choice between drugs and no or not so many drugs is a very hard one. And can be complicated, as it is in my case. Quality of life is very important but so is actually being alive. I'll never have the life I want and barely the life I need. It's an adjustment no one should have to make.

Thank you for all your responses.

Annie

Thanks for the topic Annie and thanks Erin for asking about the rest of us.


I have mixed feelings about taking medication...I would rather live with a problem than take medication in most cases, but with MG I realized that there was no life without it. I take Mestinon 90 to 120 mg per day and it makes my life liveable (if I didn't work, 60 mg per day would be enough). I take vitamins (Vitamin B complex and vitamin E currently) and try to adjust my diet and lifestyle as needed.

I don't think a person can live a truly normal life with MG...although it may be possible to appear normal to others by taking medication (I think that is what doctors and medical websites mean by normal...only the surface appearance of normal) I suppose by this definition I usually live a "normal life" (laughing about this, there is no way my life is normal even if the doctor says so).

I don't even consider remission (although I would be happy to be in remission of course!) and refuse to take any stronger drugs than the minimum necessary for me to function.

I am currently very depressed about my situation and feel like my life is over (I think if I didn't have kids to take care of I would have no desire to live at all right now). I am sure I will learn to live with MG, but right now I have not. I know that feeling sad/angry/depressed is my body and mind telling me that I need to fix this situation, that I can no longer live a "normal life".

And I am fine not having a "normal life" and never being in remission, but I do want to have some good in my life. I am getting tired of using all my energy to work for money and having very little energy left for me or my kids or my family (forget about having a friend!).