I have read a few of your posts and must have missed the one that said you were so young. That must be really hard to get this diagnosis when you still have your whole life ahead of you. I am 32 and it's hard to know the rest of my life will have limitations at some points, so I can't imagine what it must be like to be just starting off. If possible I would honestly suggest counseling if you aren't already. The others are right it is a grieving process.

It is also hard to understand when one minute you are fine and could easily go about the day and then BAM the next day you can hardly move without serious effort. I will say though I have never experienced the crisis the others here talk about. The worse I have experienced is hardly being able to move and feeling like I was hit by a truck. I can usually tell before that happens but not always, some days it is just there all of the sudden without much warning. If you are already in pre-crisis mode then I would not exert yourself. What is a week of skiing when you could end up in the hospital for weeks or months? Also I would imagine emergency services have a hard time reaching the mountain very quickly. My personal opinion is just don't go. Yes it is hard to do that, trust me I know, it makes you feel like MG is "winning" in some respect but if you are healthy you are the one winning. Also I know how I felt at your age and that was without an MG diagnosis.

If you truly do decide to go anyway, then print off a laminated card with your dr's info, your disease info, and all meds you should avoid. This way your friend can direct any EMT's to the card you should carry the entire time if something were to happen and you were unable to respond. Also you may want to consider a med alert bracelet if you haven't already. There are certain meds that can make a crisis situation much worse or deadly for MG patients if the treating medical personnel don't know you have it.

Good luck in whatever you decide.

Tyson,

my pulmonologist told me that if I have a respiratory infection I can end up intubated in the ICU, as it is I have to use my respirator after every mild exertion,

and yet, yesterday I went to one of the internal medicine wards to be there with a very ill patient and his family. I knew that it was very important for me, and for them, and I wouldn't forgive myself if I did not do that, because I was afraid of the risk of infection.

I seldom go to the internal medicine wards, because it requires a lot of effort and is risky for me, but this time I knew that there is no way that I will not.

I don't travel very much, but a few months ago, I went abroad, because there was a conference it was very important for me to attend. I knew that there was some risk involved in doing that, and I did have one day, in which I was not sure I made a very good decission...but, I am now very glad that I did that.

we can't be accpeted to give up all our plans and dreams. but, we do need to decide which are worth the possible price we may need to pay, and which are not. it is basically true for everyone, because every decission that we make in our life, has its advantages, dissadvantages and possible risks. but, it is even more true for us, because the margins that we have are much smaller, although they still exist.

what use is a life without a meaning or purpose? what use is a life of constant fear? we have to find the right balance that will not endager us unreasonbly, but at the same time enable us to live a life worth living.

we also may have to find the tools and aids that will keep us safer (like a respirator in case we go into respiratory failure), and also enable us to do more. (like a special mouse, keyboard, etc.)

some of us are lucky and achieve complete remission, which (obviously) makes this task easier, but some do not, and they too can find the way to lead a good and productive life, even if quite different that what it may have been otherwise.

in a way there is an advantage to being young, because when I became ill, I already had my life fully planned and I had to go back and think like a teenager about everything. make my choices ,decissions and priorities all over again.

I found myself talking with my 17, and 22 year old sons, and having very similar questions to theirs, about what life is all about, when I was at the age that most people (including myself before I became ill) supposedly have all the answers.

I can't give you any advice as to your planned trip, because there is no way I can know how important it really is for you, and what price you are ready to pay.

I can tell you, based on my medical knowledge, and reading your posts occasionaly, that most likely there is significant risk involved, and this should not be ignored. especially that it does not seem that you have any equipment with you that can be used in case you have significant respiratory problems, and no one with you that would know what to do, if this happens.

I think you would be much safer, and could take more reasonable risks, if you had such equipment, and your family and friends would recieve some training regarding it.

alice

Tyson,
I have tried to not comment but I just can't hold out any longer. I really get the feeling that you should not go on this trip. You have to let your body rest as much as possible and get your MG more under control. Until you do that, you will continue on this up and down cycle and the more you do, the longer it will take for your body to get some sense of balance.

I understand that you want to continue to live and of course you should but you have to realize that living for you now is different than living for you before MG. I haven't been skiing before but just looking at it I can see that it involves many muscles that can be compromised due to MG.

I know you are tired of hearing this but you have to give your body TIME to adjust to MG and how it affects you. The way MG affects you now may not be the way it will always be. I myself have gone into remission before but it was only after I stopped pushing myself, accepted the disease, followed my medical treatment plan and allowed my body to heal in a sense. It was a few years into my diagnosis but it did happen and it could happen for you too. I can tell you this, it will not happen if you continue to push the limits and hope that everything will be okay. Right now you just need to focus on finding the correct treatment plan for you that will help control your MG so that you can do the basic things in life, like being able to go to school all day and making it through the week without being totally wiped out.

I only speak out of concern for your health and your life. I hope you reconsider and pass on this trip. Doesn't mean you will have to pass on the next one NEXT year.

I wouldn't go skiing If I was you. It just feels way to risky right now.

Shari

Atlanta- Yeah, im 17 It might seem harder. and maybe it is. But i think this disease at any age sucks, but yea being 17, does suck, and having to limit myself to someone like 50, sucks. But im okay, and im dealing with it. And im really sorry youve also been diagnosed with it, even at 32, im sure its hard..I have got a therapist, and im doing well

I agree its very hard to grasp the concept of this disease, but i think im learning it, which is wonderful. As everyone has told me, time is key.

Thanks so much for your concern, i do have something in my wallet which lists my disease, given to me by my new neurologist at duke today. And also, I ordered a medical alert bracelet, so that will be on me at all times.

Hope your feeling well.

Alice- Yes, i agree having a respritory infection would be bad while going skiing. Yet I found out it wasnt a resp. infection, just something to do with my acid relfux. Yet still sucks.

Im sorry because of this your limited to doing things which you want to, (as is life w mg as you kno) But im glad you went, unless you get sick. Im glad you also go to go abroad with this disease, im not sure if i could bear it.

Yet, i agree with you 100 percent, we should all give up our dreams, and plans, yet to an extent we do need to weigh them. And going skiing is very high on my list. And i plan to do so, atleast for a day. But were going for 8

Being younger, has its advantages and disadvantages with the disease, but learning to control it is the hardest.

But, I do have a medical alert necklace on the way, and im going with my bestfriend, who i gave a card, just incase something does happen.

Thank you so much for your thoughts and advice, it means alot. yet I think i weigh this into the catigory of skiing winning. - I wouldnt, but my new neurologist who i just saw today, gave me an exam, and said i was ok to go.


Shari- Haha, its okay go ahead and comment, im always up for it. Many people agree with you, and up till today, i did too. I tried mestinon again, directed by my new doctor at DUKE, and i feel somewhat better, and it wasnt hard to walk! So maybe by the time i get there, i will feel much better....

Keeping up with friends is hard, and not doing everything they do is, so if i can do this, id be very happy.

I realize i need to learn how my MG works, but ive got a pretty good grasp so far, and im not very far into it. Hardly a year. Remission is in my future, i just need to wait for it, i hope

Thanks so much for your concern, it means alot. Hope your feeling well.