Hey there! I have also notices a "tic" when I take my mestinon. My neuro says it's b/c I'm taking too many, though I need them to make it through the day! I was up to 7 - yes 7 - a day a few weeks ago and am now down to 3-4 a day (the big boy included), so for Me the effects are still there and I do not need to up my dose.........

Let me ask you this; were all of your symptoms reallt bad before you had trouble breathing? Were you WEAK all the time? Did you have a "naslly" voice? Usually, breathing is the absolute last thing to go, so that's why I'm asking.........Are you still very weak? It sounds like you need additional meds right now - mestinon was not enough for me either, that's why I ended up in the ICU.........

You may want to ask your neuro if there is something else you can do to help go feel stronger - in my case it was Prednisone and IV IG! It really made all the diffrence in the world! My palette tightened up immediately and I was able to swallow for the forst time in a long time........

Whatever the case may be, it still sounds like you are still feeling rough and need some help to get back to your old self - whether it be steroids, cellcept, IV IG or the plasma exchange.

Do you have a good neuro? A good doc makes all the difference! Mine is so amazing! He is very aggressive and does whatever it takes to insure I feel pretty decent!

Hang in there and let us know how you are doing!!!!

Erin

Sorry. I forgot to ask this: do you have the MuSK MG? Missy girl does and that effects the body above the neck mostly....................

Also, if you take too many mestinon a day, the effects are the same as hacing not taken any at all, so be careful!!!!

Hang in there!
ERin

I've been dealing with symptoms for probably over two years now, but not to the extent that I suffer now. At first I did have muscle weakness (felt like I over exercised) but I just figured it was due to my age, and the fact that I am a very active person. Last summer is when major changes started, I had trouble getting motivated, this irritated me big time since I do all the yard work, I do all the household duties, and I help run two business'. I felt guilty sneaking off and taking a quick nap, I was extremely tired, not me at all. Then, my breathing got worse, was told asthma, inhalers didn't help. I love to ride my motorcycle, and its a big one, but I feared long trips since I got to a point where just holding it up or even turning corners was getting to be too much. And yes, when I get to the point of fatigue, my voice gets very raspy, and it gets hard to swallow. Even now on the Mestinon I know when I need to slow down because my voice becomes raspy.
Right now I'm being followed by my GP. She's fantastic, she,s actually the one who finally diagnosed me, her and the ER doctor. I go back to the neuro in approx. 2 months and go over things then. I just want things to get back to normal, but I have a feeling I have to accept that my so called normal has changed.

Kpearl,

I know it's hard - trust me. But do not punish yourself for not being able to do the things you used to do! This disease strikes people for no rhyme or reason!

I thought I was losing my mind until I was diagnosed..........family members told me i was depressed or lazy......only my hubby and FIL believed me.

I have prayed and prayed for remission. Granted, things have gotten much better since I started on my steroids, but still cry sometimes for my old life.........

My story of MG is @ www.mgsouthtexas.org if you are interested.

In the meantime, try and rest and know that I will be thinking about you and praying for you!

When you hear from your neuro, I'd love to hear what he/she says!

DO NOT overdo it!!!!

Erin

Well, First off, I'm so sorry you have MG, and I completely understand what you're feeling.
Myasthenia isn't a "progressive" disease as far as in Medical terms. However, many MG'ers would disagree.
From my own experience, I don't seem to get any worse, than my worst moment with this. But I have a waxing and waning of the symptoms, so times, I have awful crashes, that can last for weeks on end. My day to day living is one of constant walking on egg shells sort to speak when it comes to using too much energy, or being on the treadmill. It's a careful balance, that "has" to be carefully done so I don't crash.
Your doctor may need to add other meds. Currently I'm on Prednisone, Cyclosporine,Mestinon, and Provigil. It took about two years to get the meds
balanced out. (it takes a while to figure out which meds will work for you, and that won't give you side effects.)
Hang in there, and what ever you do, Call your neuro if you have any breathing issues. Don't wait. Don't over do any thing, you will pay for it, and you really don't want that!

Ask a lot of questions, read as much as you can. It's important to be as knowledgable about this disease as possible.
Best of Wishes, and again, I'm so sorry, you're having to endure this .
Love and (((hugs))
Lizzie