[tysondouglass]

Well i know many of you arent going to be happy with the news I recieved today to some degree, but i am

First, i spend 6 hours today at the Duke clinic, which is really close to my house so its convenient.

But, i was examened by one of the fellows who was working for Dr. Juel this week, and then he came in. Asked if i really wanted to be followed by DUKE from now on, and i said, no one else is giving me answers, and i want answers and he was ready to give them.

Then he did a examination on me, scoring the weakness of my muscles, yet i was quite strong today, probably due to the plasmapheresis, or maybe just was rested.

but he said i COULD go skiing yet he doesnt know my past as well as my other neuro, he said right now, my muscles look okay enough to go.
I ordered a medical alert bracelet so it will be here by the time I go, So i will have that, with MG on the tag.


He also lowered my prednisone to 40mg a day, and cellcept is still at 2000mg. and he excpects to see iimprovement from that in march.

He added 1/2 tablet of mestinon 3 times a day to my regiment as well, to try to boost me.

Yet i dont think he saw me on a bad day, doesnt that figure?
Oh well, atleast i saw him. And hundreds of ppl are trying to get into him, and its a 6 month waiting list, yet HE wanted my case. Cool eh?

the perks of being a 17 yr old with a special type of generalized mg.

But, i hope this post finds you all strong


Hang in there.

[Joanmarie63]

Tyson,

I am SO happy you got to see this Dr. I am glad he told you that you could go skiing, I know how much you wanted to go! You know your body and you know when you are going to start going down hill {pun intended}

Him lowering your pred dosage makes me very, very happy, as I always thought you were on to much anyway.

I wish you continued good things here and a wonderful ski trip!

[Maxwell'sMom]

Hi, I can't imagine anyone, Not being happy for you. If you can get out there and live a little life during a time when your muscles are strong, Go For It. Enjoy every moment of Life you can get.
I would absolutely love to be able to go bike riding, or go on a good long hike through the woods,and any time my muscles are strong enough to even do just a tad of it, I go, and do, and those memories help get me through the down times.
God Bless you, and go and enjoy yourself, listen to your body when it says rest, so this can last for you.

Love,
Lizzie

[Maxwell'sMom]

Okay, so I just read your previous post.
I'm curious, did you discuss Everything with your new doctor? This is important. If you Did Not discuss everything about which you spoke, then maybe you should hold off.
With MG, we do have to take our moments when we can, so if you are feeling strong, go, take it easy, and above all Listen To your Body, but, have to say, if I was your Mom, I'd probably lock you in the attic until I spoke with the doctor, and asked all kinds of questions. And since I have MG, I'd know what to ask, and would know what to Tell.
Duke is really good, and although I don't think the doctor would tell you, you could go, if he really didn't think your body was up to it, I also think it's important to let him know everything, if you did that, then, I'd trust his opinion. (as long as you know to listen to your body, not getting too breathless..etc..)
Love and Prayers
Lizzie

[AnnieB3]

Tyson, Do you really want a doctor who will give you the answers you "want" to hear? I like when doctors are completely straight with me, whether I like it or not.

You haven't had MG very long and it has been wholly unstable since your thymectomy. I find it highly irresponsible for a doctor to tell a patient with your recent history to go ahead and ski.

Yes, quality of life is important but so is breathing. High elevation, on a mountain and in an airplane, lowers oxygen. The body has to keep up more and your heart will beat faster and your muscles will work harder. Just the basic biology of going somewhere is not good for MG, especially not when you haven't been doing well. I push things sometimes but not when I'm unstable. Last time I did that, I ended up in a crisis.

Would you trust a FELLOW (neuro in training) more than an experienced MG expert? If so, that's dangerous. Dr. Howard, whom I greatly admire, has seen so many MG patients. He's not only a clinical doctor but he is a teacher, researcher and speaker. He's highly respected (especially by patients). You may want to think about all this for a few days or a week to really see what is best for you.

You have to be so damn careful when you lower Pred. Maybe you'll be fine but it has quicker effects, bad or good, on the body than Cellcept. Cellcept can take up to six months to really kick in. Why does he think March is the magic month?

It's your life and you'll do what you want no matter what we say it seems. Age and experience actually do often know what they are talking about. I guess you're going to have to go through a few more trips to the hospital before you accept what is going on. C'est la vie.

Take care, whatever you do.

Annie

I have to say this . . . Institutions aren't good, doctors are (no offense, Lizzie!!!). Even the big places like Mayo, Johns Hopkins, etc. have some pretty bad doctors. I do not like the feel of this situation, but it's not my life.

[Shari_W]

I agree with you 100% Annie. I just feel that it is too risky for you to do this Tyson. MG can be very unpredictable especially if it is not yet controlled in some way or another. You even said that he saw you on a good day. That is how it is until you find the treatment plan that works for you. Some days are good and some days are bad. It just depends on the day. He saw you on a good day. But do you think he would tell you to go if he saw you on one of your worst days?

Until you have more consistent good days, I feel you shouldn't take the risk of going into a crisis while you are on your ski trip. I could say much more but I will stop now because I can see that you have your mind made up about this ski trip. I just hope that your body will be able to handle what your mind is going to put it through. Hopefully your MG will get more stable before your ski trip so you can enjoy it to the fullest. That is my wish for you. Just be very careful either way it goes.

Blessings,
Shari

[alice md]

I agree as well,

trusting a neuro that has only seen you for a few minutes on a relatively good day, is not a good way to go.

they can be mistaken big-time, as to the true severity of your illness.

it is very tempting to hear what you want to hear, and think that you are much better then your really are. ( I call it, physician assited denial, and I have had my good share of it), but unfortunately this does not change the reality.

also, the fact that someone works in a large acedemic center, and is considered an expert, does not automatically mean that he/she has good clinical skills.

you should know the truth and what your true limits are, by now. don't be fooled by anyone. and do what you know is right.

in retrospect, the only serious mistake, I admittedly did, was that I trusted my physicians, more then I trusted myself. and when they told me that I have a mild illness and can do everything that I want to do, I was very happy to trust them on that, even though every muscle in my body told me very clearly something very different. (but why "listen" to your body, when a highly experienced and knowledgable physician tells you something completely different, and much nicer).

alice

[Maxwell'sMom]

Annie, pleeeeeezzzeee don't put words in my mouth. I just meant that Duke( meaning the doctors) is known for all it's work with Myasthenia, you are not his doctor, I'm not his doctor, "his" doctor has seen his charts,examined him , talked with him in person..etc...
I don't know the whole situation, I haven't been following along that close, but I know what it is like to have so much taken away at such a young age.
If his body is going through a strong period, then he should be okay. But if he is very unstable, then he should use caution. It's up to him, and his physician.
Please, like you, I'm just giving my opion.
I know you have problems trusting doctors, and although, I've had my share of bad doctors, I know many, who are wonderful caring individuals. I'm not going to automatically believe his doctor at Duke is an irresponsible quack. It's unfair to
assume something that we have no way of knowing.
Just in case, I'm speaking in very friendly tones here.
Love ,
Lizzie

[AnnieB3]

Oh, Lizzie, I wasn't trying to put words in your mouth! I was trying not to upset you but did anyway I guess.

We both know there are good and bad doctors out there. What I was trying to say is that to blindly accept what a doctor says from anywhere, whether it's Duke or Mayo or a country doctor's clinic, is not sensible and could be dangerous.

A neuro "fellow" or "resident" does not have a lot of MG experience, even if the docs at Duke do. And he may be trying to "please" the patient.

It's just that given Tyson's (sorry for using you in the 3rd person) history, it's dangerous to ignore the other advice from a SUPER MG EXPERT, who has seen him more than once.

You know how much I adore and respect you, Lizzie!!! And, yes, all of us can only "guess" at anything here. I just do not have a good "feeling" about this and I don't want you, Tyson, to have a bad crisis.

Annie

[Maxwell'sMom]

Thank you Annie, I appreciate that!
Love Lizzie