I became ill over 10 years ago but didn't get a diagnosis until 5 years after that. I've never been in crisis enough for a respirator, thank God, but I've been hospitalized 3 or 4 times because my breathing was tanking. Luckily I've got a neuro that listens and gets me into the hospital quickly for a few days of IVIG if I need it. I'm on mestinon and Cellcept, and I get IVIG every 4 weeks. I'm still working, but I am blessed with a very supportive husband and daughter. They have taken over the house. No real eyesight problems except some blurriness in the evenings. Lots of arm and leg weakness. Definite breathing problems, my voice gets raspy easily, and choking is an occasional issue. I've learned what I can manage and what I can't pretty much.
My mom said forever that I "looked fine" and nothing was probably wrong. I hate hearing how good I look...I have gained about 40 pounds thanks to this stupid disease.
Well, that's my venting for the day...

Cheryl ,You just vent away!!!! It's been a long time since all of us old board members have posted. How is your Mom?
Erin,
How long have you been on the Prednisone. I've been on Prednisone for well over 4 years now, and haven't had a day with out them. I want to get off them more than anything, but my body is giving me some difficulty when ever we try.
Becareful in watching your Adrenal Glands, look for Diabetes, Kidney problems, and of course Blood Pressure issues, and in me it may have caused Pulmonary Hypertension. Prednisone is a great med for immediate results, but there are so many other things that it can affect. Eye pressures, Cataracts...etc. I would give anything if I could get off of it. I'm a little puffy from it, but not too bad, lol...I have more important issues with my body to deal with. Like, I want to Stay awake, I'd like to live a long happy life.
Besides dealing with Myasthenia, I am a Narcoleptic, I have dysautonomia, and now Pulmonary Hypertension, not to mention all the little junk like, Raynauds, Diabetes, thickening of the left heart, 30 percent of my lungs weakened by MG....etc... And I'm only 44.
Wow, I guess I had to vent too.

Love Lizzie
P.S. Does Lois show up anymore?

Hey,
Actually, my mom is doing pretty well. The cancer has spread into her hip bones and spine, but, at this time, it's not growing at all. Still there, but chemo and radiation have it not growing. In fact, they can't even see any in her breast right now. She is still in pain - apparently bone cancer really hurts even when it's not growing. But she is doing well...she and dad did some travelling this weekend for the first time in a few years. She gets tired easily but looks really great.
Thanks for asking and continued prayers.
Cheryl

Yeah, my family was pretty much the same way. I think in some weird way they just couldn't handle it. It took a lot for me to finally be hospitalized, but then I was in the ICU for days - thankfully - I think it truly saved me life! I've also got a great neuro who gets me in IMMEDIATELY when I start to feel weak or have "wonky" eyes......I hate the PICC lines, but they are great once they are in! Plasmaphoresis was the worst for me - absolutely horrible - followed by 4 days of IV IG a couple of months ago.........don't get me wrong, I was really weak and swollen, but it worked! What were you initial signs of MG? What meda r u on? Take care and let me know how you are..........Erin

I've only been on Prednisone for 6 months now! It has made all the difference in the world! Granted, hairy moon face is not a good look for me - nor is the "wooky" hairy body I now have, but at least now I can work (most days) and can (again, most days) take care of my family What dos your body do when you try and get off of the steroids? I kknow that the pressure in my eyes has gone up 10 points since I've started on them and my doc wans to check for glaucoma, but Im just so very thankful that it has allowed me to lead a somewhat normal life! i'm so sorry to hear you've had so many problems - vent away whenever you feel like it! Talk to you soon! Erin

My thoughts and prayers are with your mom! I'm going to add her to my prayer list! Tak care!

Cheryl, I've thought of her often, and have kept her in my prayers, as with you. Life can be so hard sometimes. But I'm so happy to hear she is stable right now, and pray it continues.
Love ya
Love Lizzie

Erin, Every single time they lower my Prednisone, my breathing tanks,and my adrenals don't want to wake up. I become very weak, and muscle cramps are beyond describable, the pain can be unbearable. I end up with a fever, and basically curl up and am so tired, I feel comatosed (sp?).
Yesterday, I met with a new Neuro who is working with my old neuro, and she is an Myasthenia Expert, she said that right now they don't dare lower my prednisone, but will reevaluate that in a couple of months. They finally got me somewhat stable, and want me that way for a while.( um me too) I don't like choking everytime I eat. Eating can be a chore when choking all the time.
This is such a complicated disease.
Your eye pressure jumping up ten points, is a concern, make sure you have them check them often. You don't want to end up with Cataracts. I've been blessed in that way, mine have stayed right around 16-18. I was told that if you're going to have a problem with your eyes because of prednisone it will turn up with in the first few months of starting, so please be careful to get them check, I know you will, it's the "Mom" in me, if I don't say something, I'll be worrying about you during the night..sorry.

Love Lizzie

This is such a freaky disease! It effects EVERYONE in such different ways ; my breathing NEVER tanked until the very end, right b/4 my crisis........My main problems were extreme fatigue (very, very weak), double vision, etc, until the very end. Granted, I do have panic attacks that effect my breathing, but xanax really helps with that! I'm just sooooo very thankful that I can now swallow, eat, walk, work and take care of my family! Does your neuro have any idea why he reduction of steroids effect you like that? I was up to 80 mg. a few months ago, now down to 20 daily. There are days when getting off the sofa is simply not in the cards, but other days I feel I can conquer the world - such is MG. I am very worried about my eyes - cataracts/glaucoma are a real concern for me. I will call my doc and schedule a appt.for the next couple of days!

When you get some time, let me know how you are doing!

Take care!
Erin