Kristy,

How are you today? Have you started on any new meds? Any new news from your doc?

Things are great here! I got a lot of work done today and look forward to our new office space - we are moving tomorrow...........

As for me, I was really surprised with all the wonderful info neutro was able to provide about potassium, etc - I guess that's why I crave OJ and go through a gallon a day. It is amazing what the body can do and how it copes with our disease. For a while there I was craving fried egg sandwiches and whole milk all day long and a woman I met @ the Cancer Care Center here in SA said she craved the exact same thing when she was going through chemo - my hemo told me I needed MORE calcium and vitamin D, so I take supplements every day, in addition to iron - apparently my body doesn't "store" iron properly - no idea why, so I go in for blood work every 2 weeks now. Hopefully that will change soon,as I am still scared stiff of needles

I know this is kind of a personal question but I hope you don't mind my asking; how old are you? Do you have kids? I am 34 and have a gorgeous 16 yr old who is the love of my life! My hubby has also been truly amazing through this whole thing..........I was diagnosed in March and had my thymus removed in April. The whole thymectomy thing is kind of a hot button issue, but @ the time I had it I was just so ready to be well again that I decided tohave it removed - they had to do a transsternal thymectomy b/c there were hundreds of little spots on my lungs and they wanted to biopsy them while they had my chest open - not fun, but I got over the pain - though I do occasionally take pain meds when it really hurts..........

Try and keep a positive outlook. I know that is really hard, but we need it in order to look @ the bright side. We have enough to worry about without seeing the negative in this whole MG thing. People ask me all the time how I can be cheerful when I have an incurable disease and I reply "What are my options?". My dad had a stroke 5 yrs ago and it has just made him so bitter. I try and remind him that it could be a lot worse, but he isn't ready to hear that yet - hopefully he will be in the near future, cuz' he was once so witty and funny and now he is a shell of his former self - self pity just doesn't pay off. Don't get me wrong, there are plenty of days when I do wallow in self pity, but then I eat some chocolate, cry and get over it..........

Plus, @ the Cancer Care Center here in SA my nurses reminded me that people with positive outlooks are usually healthier than people who don't have one

Sorry for going on and on - when you get some time let me know how you are!

Take care!
Erin

K ~ Sorry to hear about your doctor not having much time. This forum is a lot of help though. Friends and family are very much help, but it is nice to come here and talk with people who are having the same things going on and understand. Thank you for your encouraging words!

Erin ~ Today is going well. When you originally asked it was pretty bad, actually all weekend. I kinda pushed it and it bit me in the rear.. It seems like it has gotten worse since I found out about it, my mom says because I'm stessing about it. It's hard not to think about it, trying to though. So how was your move? I hope it was good.. Thanks for your positive words!

Hope you both are well!!

Kristy

Hi Kristy! I'm so glad to hear you are feeling better! I've been dragging tail lately too, though I'm worried that if I call my neuro I'll end up back in the hospital - last week I had tons of energy - this week absolutely none! I'm still trying to get our office together, but it's going to take a while - my hubby and FIL keep teeling me to take it easy, my sis keeps rolling her eyes........Family - what can you do?

Hey girl, sorry bout the diagnosis. It can be very scary and very much overwhelming. All of the what ifs----oy make you a bit insane in very short order.
My very best advice to you, take a deep breath. Sit down and let it sink in for a while. Don't try to "investigate" anything right now. Just give yourself some time to take it in. Talk with your family about it. Let them help you thru this initial shock.
Stay active in whatever way you are able. The key to any and all activity is to go and do but don't overdo!! In other words listen to your body. When it says hey girl need a break, don't push it. You can't push thru this anymore. Not just building endurance like the old days. Ya know, come on one more!! You can do it!! NO this is not the MG way. The MG way is ok, today I'll back off. Tomorrow I'll see how far I can go again.
The key to living the good life with mg is to listen to your body. Get lots of rest. Eat right. Exercise if/when you are able. Stress levels are a big no no. Have to keep those in line as much as that is possible.
Try not to look at the future of the MG to much. The way that we present and the "disability" we have varies greatly from one person to another. Many people are well managed on medications and hardy know they have MG. Others no matter what they get will be a mess. So the variables are so vast, one would be insane trying to figure that out. And let's face it we CAN'T figure out the future unless you are my friend Missy and have some kinda sick sense!! LOL
But seriously, I know how your world has been tossed askew. Let it all slow down so you can catch up again. Then move forward with your docs.
As to the prednisone, I see you are concerned about wt gain. That can be an issue. Again some no matter what they do puff up and that's their reality. Others you'd never know they were on it wt wise.
Eat a balanced diet, mind your sodium intake. Keep your fats and carbs in recommended ranges. Keep a close eye on your wt so if you do start gaining you can make necessary modifications to your diet to help curtail it.
Well, all this to say , hi and we are here!

Kristy,

How are you? I hope you are doing much better! I know it is hard, but you simply cannot push your body as hard as you did before. Easy for me to say, I know, but I do the exact same thing and end up feeling yucky for days!

My hubby surprised me with breakfast in bed today. He is so sweet! I'm taking it easy today - for the most part!

Hang in there and let me know if you need anything!

Erin

I knew nothing about MG and just did a quick search and found a success story from a lady taking Lecithin..she deals with MG.

Grape Seed Ex could help with the MG issues also. I'm searching that as I've been taking grape seed for going on 21 yrs. I do not deal with MG, but just learned a bit about it.

I just found this overview with pros and cons.

https://www.drvitaminsolutions.com/c...enia-gravis-01

Surprised to find this in my inbox today on Lecithin:

http://www.fourfoldhealing.com/blogs/news