Just back from my neuro.
 

Hm, could this get anymore dissapointing w/o having to be in the hospital?

It was just a check up, but this is how it went down.

Did his normal check up, looked in eyes because of headaches. etc, did the muscle testing. Right arm and leg pretty weak, yet otherwise quite well.

Though the worst was at the end, when asking about skiing.

He said, I was so close to itibation (sp) last time I was hospitalized that, I while going down the mountain I could collapse, going into respritory failure....How true do you think that is?

Im getting a second opinion on Monday, about the ski trip. I have an EMG schueduled with them aswell. I want to try mestinon again to see if it will work, is that a bad idea while on cellcept and pred?

They may suggest doing that on Monday at duke, but i want to try it NOW.


Im really tired right now, just got back from ear, nose, throat doctor, and have 2 respritory infections sort of...1 from acid reflux, maybe causing chest pains...and the other just sinusy.

And have a few ganglian cysts on my wrist..


Damn.


Well, i need to nap.

hope you all feel somewhat okay.

:hug: Tyson :hug:

I am sorry your appointment didn't go well. I would NOT add mestinon to your meds without your Dr knowing. I don't know anything about cellcept other than reading what everyone writes about it, I will never try it.

I only take mestinon and it helps me when I need it, but I still get very weak at times, today I dropped my water cup because my left arm was to weak to hold it, soooo, rest time for me :)

We have our good days and bad and only YOU know your body and how it is feeling and you will know if you can ski or not. If your Dr. is that worried about your breathing than maybe you should listen to him.

We all know not to push ourselves to hard. I really hope you get to go skiing, as I know it is something you are really looking forward to. PLEASE continue to keep us updated.

Hey Tyson,

I agree about not adding any meds before Dr approves.

Re: skiing
I know this will not be what you want to hear but... is skiing really worth the risk of being on a vent OR going into complete respiratory failure?

Harsh? Maybe. But I believe your doctor is being straight with you. Think about it. The exertion of the trip, the cold air, asking your muscles to ski -- when many times they balk at carrying you up a flight of stairs. The odds of your being able to safely ski right now - let alone enjoy it - are, unfortunately, not in your favor.

Tyson, I have no doubt you will ski many times again in the years to come - - just not this year. It stinks and it's not fair and I so very much wish it were different...but it's not.

I'm really, really sorry - - but I agree with your Dr. Skiing just isn't a good idea right now.

Sue

Joanmarie- Thanks for your support. It was a hard meeting, he was asking me how i was dealing with it all. How do you think im dealing with it mr. neuro? Your telling me if i excersize AT ALL, i could go into complete respritory arrest. Wow cool. Yet im okay with it, im not happy.

I wont try mestinon until I talk to the doctors at Duke on monday, my neuro said they may make me try it again anyway. So hopefully it works.

Is it stupid to just try it one day, to see how i feel? Or half day?
I hope i can skii too, and thanks.


Sue- Im having everything taken away, piece by piece and its killing me. My SAT scores came back today, they were horrible, due to the fact i was starting cellcept, having horrible headaches, chest pains, etc. etc. Whatever. Im just in a horrible mood about it all.

I know its not worth it, but i want to do it SO bad, because everything im trying to do is failing. I know my doctor may be right, but why cant I atleast try it?

I know things arent really in my favor, yet im wishing for something.

I know also ill be able to in future years to come, but right now, i want to be able to skii. Im going with my friend, who is able, and healthy as a horse, and that ****** me off, that i cant even be healthy enough to SKI!

Please dont be sorry, its life i suppose.

Thanks.

Hi Tyson,

man I wish I could say "go skiing", sheesh, I'm ****off for you!!!!!! But listen to your dr, if you were close to being intubated, well thats kinda serious. I do understand, all I want to do is drive to the beach and spend the day swimming, and exploring the shoreline, but just driving to the chemist exhausted me(a minutes drive away), it sucks big time, but yes its life.

I'm on cellcept pred and mestinon, but yes maybe wait to try it after you've seen the dr on Monday.

Mate I wish I had the answers for you, wish I could say go skiing you'll be right, but in my heart of hearts, well I don't want you to end up worse than you are now............

Thinking of you, take care and keep comming here to talk/vent,
Kate

Tyson,

It is ok, to be ticked off, really ticked off, accepting this illness is like accepting a death, you go through a grieving process.

I have watched/listened to you go from a frightened child to a remarkable young man! You are handling this illness with a strength I wish I had when I was DX'ed. You amaze me and I am so proud of you and how far you have come.

So be ***** at the Dr., at anything and everything you want as it is good to get those feelings out. Remember the cold and high heat is our enemy and we must adjust, and adjust I know you will do. This DOES get better as time goes by, as you learn your limits, and we all have different limits on different days.

Tyson, when will you stop kidding yourself?
MG is an illness not to be played with...and all its medications take some time to have some effect. I'm on Pred, Cellcept, Mestinon since 2 and a half years and presently a weekly Plex.
Mestinon is not going to boost your muscular strength to the point it was before.
I used to swim every day (covered pool at home) and I had to stop for a year, I used to go skiing every year and that will be my third season that I skip...
Besides the medical problems associated with MG you could have while skiing, have you thought at the possible physical injuries like twisted knee, teared ligaments because you weren't able to correctly go down the slopes, even bone fractures because you couldn't control your speed and direction?
If, at least you were going with a good friend of yours or a relative who is aware of your condition, you could go and try the first day the easy slopes (in France the blue or green ones) to see how it goes and then decides how to continue but no, you're going with «healthy as a horse» friend and I'm sure there will be a constant competition from the start...
I know it's hard to accept but we all have had the same feelings and we all fight every day to have the best life possible, some succeed and some not quite...
Sorry to have been so blunt but I was just trying to put you in a more proper (at least from my point of view) perspective.
Maurice.

Kate- I wish you could say go skiing also:) I wish we could all go skiing! I know its serious, though, i know myself, and when Im going towards a crisis quite well now, isnt it feasible just to try one half day or something? Just to see how it affects me? If i start to feel horrible, i WILL stop.

Im sorry, that your not able to spend the day at the beach, i can completely relate such as to skiing. But it really sucks, and that youve been dealt this card is even worse. Im excited about my app. tomoorrow at Duke, after the EMG test, maybe they will have answers for me.

Hope your doing well.

Joan- I know, thanks. Its just hard of finding a good balance because often times its more of me being ****** off than it is me being happy. and i hate that. But maybe i play it off quite well, or maybe i am quite strong. Maybe a little of both. Thanks for all your encouraging words. Hope you feel well.

- I think im learning my limits, and when im getting close to a crisis, which is nice.


Maurice- Your fine being blunt, sometimes it needs to be put out there like such. But, when will I stop kidding myself? Im 17, so at this point, it might take a while. Im almost at terms with it, yet im still in awe to some extent. I know its not anything to mess around with, yet I dont feel like, im just going to STOP breathing on the mountain, i feel like id be weak first, then gradually start getting worse, and i can tell that.

Mestinon may not boost it to the strength i was, yet more than i have. Im sorry to hear about your not being able to swim or ski, i know its hard.

I am going w a good friend, and family, so im in agreeance, to see if I can do anything, atleast blues, if not blacks. Im going to try it no matter what, I think, and if i start feeling anything, then i know i need to stop. But i know my limits much better now, and what I can tolerate.

It is hard to accept, and i fight these feelings, everyday as we all do.

Hope your doing well.

No, it's not feasible. You are still thinking that MG can be "controlled." It can't. As if it's a perfect science. A + C = B + C. Nope, not mathematical either.

You must be in the "bargaining" phase of grief/loss. If I only do "this much," then I'll rest and be fine. It doesn't work that way with MG.

You have got to put the STOP on everything. At least for now. If you don't, you will end up back in the hospital. Or the morgue. Sorry, but I don't know how else to say this right now. You are absolutely kidding yourself.

And when you are at any elevation on a mountain, your O2 sats will drop, making it even harder to breathe, forcing your muscles and heart to work overtime. A stroke or heart attack can happen easily under those circumstances too.

Now I'm blue in the face, so I'll stop.

Annie

Hi Tyson,

I agree with everyone here that that sorta exertion will prolly make you really ill if going up the stairs is hard on you. Throw in the high elevation, as Annie pointed out, and this is a recipe for at least an exacerbation (at least).

My aunt went on a trip to BC and was shocked at how bad her breathing was when she had gone for a swim (higher elevation). Mind you, my aunt is 59, but she is in great shape, has never smoked a day in her life, does not drink alcohol, has no illness, takes vitamins/supplements, eats well...The whole shebang...Now imagine someone who is already compromised in the breathing department, has had surgery fairly recently in the vicinity if the lungs, and whose illness impacts other muscles which will tire out the breathing just because of that weakness alone...

It doesn't mean you'll be like this forever, and you'll always have to make these kinds of sacrifices...It just means that you might have to make them around this time...Later, you will most likely be well enough to do these things again...I know you're depressed because of being sick- believe me, it totally sucks, I know...But if you do something that has a good chance of making you sicker, it'll take that much longer to get back to your normal baseline...My neurologist always tells me that...with MG, your baseline of 'normalcy' will get lower the longer the damage has gone on/the more things progress because of exacerbations...

Please take care, Tyson!:hug:
Nicky

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.:winky:

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, :hug:
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. :winky:

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.