Ivig not Irving... Darn spellcheck

First of all we said to rest but...we didn't say skip treatment. There is other treatment besides IVIG. Slurred speech and trouble swallowing and blurred vision will most likely improve with rest but to function in life most likely you will need treatment. Have you considered treatment such as prednisone. mestinon, or cellcept. I never was able to shower, drive, or grocery shop when my speech was slurred. When I had trouble swallowing I was in hospital or just home fromit. I never drove when I had your symptoms. Those symptoms had me in the hospital,

I hope rest does the trick and you get the spring in your step you're looking for. I wish you luck. It might take more than one day of rest. Hopefully IVIG will be approved soon and it will work wonderfully for you.

Hope you'll soon have IVIG. No amount of rest is going to help without treatments, so I hope you got a list of treatment options from your neuro. Good luck with all of this. People here are strong, knowledgeable, and generous, so I hope you get useful here.

Hi eveyrone, the rest helped!! Yes, Ann, I am on mestonin and prednisone and awaiting the insurance approval for IVIG which can hopefully happen next week. 6/1...Ive been on prednisone for several months, and i am going to do this IVIG and i am awaiting results on an unrelated biopsy before i can proceed with a thymectomy, so there is a plan in the works, i am just trying to be more functional in the meantime..the whole "motion stays in motion" thing only works so long.. If nothing else i have a good attitude this morning.. thats worth something right??

Maureen so glad rest is helping for now and your ivig can be approved soon!! Glad you are at least on the prednisone and mestinon..That should help also...And people here are so knowledgable and supportive Im sure that will help with ideas etc..We are all rooting for you and hope gets better soon...Good luck and Hugs coming your way......

Ps And keep that great attitude helps so much..I find I get down and am a very nervous person and that makes worse so keep up that attitude and it will REALLY help alot...

Hope you get your Ivig soon and that it works beautifully for you!

Great on getting so many things lined up! I am just on mestinon and rests ate interspersed within my day. Every day is different and titrating my mestinon and rest periods with activity is the name of the game for sure! So is doing my most challenging things in the early part of the day.....and planning activities in a way that will leave me enough muscle power to do other things. Repetitive anything is out.
Also avoiding heat.....Staying well hydrated helps too. Some of it gets
to be habit.

Sounds like you are getting a plan in place....Good luck with all! Marie

rest is helpful so much for me anyway. im up today feeling better after a 4 day stint in bed sleeping all i can. when the weakness gets so bad all this guy wants to do is to go to bed and sleep. somedays it may take a few hours to get some strength back, or even one day, other times like this past week, it took 4 days to rest up to get enough energy to go to my rheumy today which is 3 hours away. im better this morning but still weak somewhat, but i have to go to this appt. and yes the driving,grocery shopping are at times huge challenges to all of us. i have learned to do what i do when my body feels like i can, but when i go ahead and do it when the body says no, then its the bed rest for me. when i first came into this group one of the the first things i was told by one of my heros on daily strength is REST, you must rest. sometimes it makes me up set as to how long it takes to recoup, but what else can i do when i have people who depend on me for things, but rest, rest and rest. best wishes to you on the IVIG, THEY CAN HELP. ....TERRY

Im glad the rest has helped you and without a doubt agree with jvobrien on a good attitude . Remember also that an object in motion stays in motion , Maureen and of course don't ever give up .

Good luck with the ivig , you will do great.Cj

Maureen, so glad you have a plan in place. It's so tough to be patient - especially with a disease where often the best (only) thing we can do is rest. Others may not agree (dissent is helpful! yay for having different experiences and opinions), but I think one of the most important things I've learned with MG is to reframe how I think about life and be more intentional about prioritizing. Treatments, surgery, and rest have been helpful for me, but I still can't regularly do many of the things you listed. Despite what medical textbooks say, many of us with MG will not be able to resume a "normal" life - we have to be much more thoughtful and selective about how we expend energy. My husband and I have had to change around who does what, so that I can still participate by doing things that don't require as much muscle use. He does the shopping, most of the cooking and cleaning, and even often washes and dries my hair for me. We've tried various lifestyle changes, and this is what works for us at the moment, because it allows me to not get so physically exhausted that I'm in danger of a myasthenic crisis. I do things that require more mental energy, like thinking, planning (a lot of "how can we do x or y with as little wasted energy as possible"), managing our finances, making meal plans and grocery lists, etc. I do some cleaning and other physical housework from time to time, but with the knowledge that I won't be able to do other things and will have to go rest. I do part-time work from home and sacrifice the many benefits I get from having a full-time job in an exciting/challenging environment (I used to work a crazy 70-100 hr/week job that was incredibly stimulating), so that I can have enough energy to go visit my family a couple of times a year, go to church weekly, and spend an evening with friends a few times a month.

Everyone is different in their abilities, values/priorities, life situation, level of MG and response to treatments, other medical complications, what they're willing to trade-off, and these aren't always evident in what people write here on DS (not intentionally - it's just a lot to cover). Please don't get discouraged - it is a tough condition to manage, but can provide a really great opportunity to live your life more intentionally. We're all at different places, but we can relate to the challenges better than those without MG. I know it's horrible and can feel so defeating to be in a phase where it seems like you can't physically do anything (see, talk, move, eat, etc); I found in those times, the only thing I *could* control was my mind, how I thought about things, and tried to see it as a chance to develop and grow my own character (for lack of a better term). (Or maybe distract myself by listening to audiobooks, haha). The alternative is to stay depressed, and that's no fun. Life with MG may not be the life we wanted to live, but look for ways to make it a life that still provides meaning.

Hugs, and hope treatments offer you some benefits. :)