Sort of neither a "medical" nor alternative medicine remedy: ice packs and a cooling vest for hours a day/night. It's probably a good idea to put it on whatever breathing muscles aren't working. You can wear warmer things over the packs or vest so that you don't feel sick from cold.

It's really pretty awful and sort of hard to convince anyone to try it online (even in person, someone tried it with me) but for what it's worth ...

For inspiration (don't watch the swimming, just look at that ice ...):

http://www.youtube.com/watch?v=SIsKYPmOkmc

I wouldn't recommend this if you didn't write you were desperate, and hadn't said no meds (and I'm assuming alternative therapies aren't going to do enough) but it sounds to me like one of few possibilities left. It's pretty unpleasant but it may well have some actual benefit.

You've tried things like spacing out 40 mg. of Prednisone, over a day (spread out) I assume (and then tapering to nothing over about a week) or even teeny doses (like 3-5 mg.) a day for some minimal period I assume ... (Sorry to beat a dead horse and don't respond to that because I know you don't want to give any details -- but that's for just in case you haven't considered every little variant).

Spend whatever time you need to (months, whatever it is) not going out. Obviously from this thread, more strangers than you know hang on your every word and (I imagine) think you're beautiful without knowing what you look like. We must all have imagined that you have perfectly styled hair even without your salon treatment! It's not exactly the same as your being able to do everything you want but adulation should count for something!

Hi Annie,

Hope today is a little better. I posted some things that helped me and thought about my friend...the other day she came to visit at lunch so I made my kale smoothie...she spooned a little here and there and finished it by the time she left.....yesterday she stopped by and said..."What the heck was in that drink??" (I thought she was going to say it gave her the trots..LOL)

She said, I had the best nights sleep I ever had in years. So maybe try a kale smoothie to calm things down.

Wish you lived near me and I would come and help you out.

Take care

Annie,
I am really sorry you have been having such a bad time. Since I am still learning about MG I can not offer any medical advice. However, I can offer prayers on your behalf and pray that you receive a healing touch in body, spirit, and mind. Praying you feel the Lord's comfort and presence as you face this battle with MG.
Interested

I want to thank all of you for you kind words and thoughtfulness. I'm worn out but will respond soon. Jana is busy right now, the little rascal, but I thank her anyway for her fierce and honest responses in the past. Many of you can have other treatments and it's beyond difficult when you are stuck with lessening what you can do because you can't do anything more.


Annie

[Annie, I know where you are coming from. I had an episode for about a month just recently where I was so sad and depressed and tired of this. I have never been one to be depressed. We all have a journey in this life and have to continue until it is over so we should make the best of it. Prayer is what get's me through and hope. I am praying for you because if no other, you have a purpose of educating those of us on this forum. Thank you so much and hope.

Sharon Taylor

I've had some nonstop sleeping, so I'm better.

I don't only have MG. My immune system has been frogged up since birth, so I have other issues such as celiac disease. If I don't pamper myself, everything gets off balance. It's like trying to balance on a seesaw. If I get too weak or tired, I can't make good food. If I can't make good food, I feel worse. Due to celiac disease, I can't have a "throw a meal in the microwave" kind of life. It's a whole food, not easy to prepare kind of life.

What set me over the edge was seeing another doctor and having to give him "the list" of all of my medical issues. I try not to think about them on a daily basis. Anyway, so my PTSD kicked in during the appt. I'm pretty good at calming all of that down but, you know, wrong place, wrong time.

It occurred to me later that I should have a section on "the list" for what is right about me! No one is a sum of their health conditions. But I felt like such an absolute nothing after meeting a complete stranger, sharing all of that personal stuff and realizing that it IS all beyond overwhelming.

Celeste, I really appreciate the offer. I tend to "suck it up" and just deal with things on my own. I've been doing it that way for so long that it's a habit. Thank you for caring.

Lynne, I'm glad if I helped in any way. Thanks for the good thoughts and prayers. No, it's not presumptuous of you, but kind. Things have not been very great. I'd like to think I'm strong but I sure have not been these days.

Rach, You're the best. I know you often feel like crap, so I appreciate just the time you took to post. I always laugh when I read your line about MG. It's so sad but so funny.

Quandry, I do have some hope about the medical aspect of all of this. The problem is that I'm having to come to some kind of new "grip" on my reality. Maybe I didn't want to admit yet that things are so bad in so many ways. When it slaps you in the face, it's a little hard to deny it. When you're sick, you can get support from family and friends, care from doctors, etc. but we're all really alone when it comes to dealing with our disease and life. I need so much help in so many ways right now (i.e., cleaning!) that I'm completely overwhelmed. This MG thing is new for you and I hope you will be able to live with it better than I am.

Limpy, Thank you. I don't want to give up nor do I want to stop doing what I can for others. But I've gotten to the point where every day is the bare minimum to survive. I honestly hate it. I guess I'm in an "angry at MG" phase right now.

Seishin, I've been off of gluten since 08-2004 when I was diagnosed with celiac disease. Yeah, I've checked every single little food, toothpaste, shampoo, etc. My hair stylist has almost put things on my hair with gluten. I always insist on seeing ingredients first. I do appreciate all of your suggestions. The problem is that I've been on this holistic road for so long. I'm a research nut and was also lucky enough to do design and marketing with some organizations that put me in the path of some pretty amazing leaders in holistic medicine. But I doubt I've even skimmed the surface, so I always hope someone has something to offer. The support alone is beyond helpful. I do appreciate it.

Kathie, Geez, I'm not good at sappy. That is a very sweet poem and I appreciate it. You have it spot on when you say that disease robs of us balance. None of us exactly want our "job" to be managing an illness. I do ignore things like cleaning to write, draw, learn or do anything creative. I'm actually quite silly and giggle daily. I do take time to feed the birds and squirrels in our backyard. And the bunnies. If you feed them, they will not only come but bring their friends! I have had two Shih Tzu puppies. The last one, Teddy, died nearly two years ago. It hit me hard. I honestly don't know if I have the schedule, strength or money to have another dog, let alone the heart if yet another one got sick too young. Teddy had just turned 8 when I had to let him go. Yes, it would be a great comfort but I have to think of what's best for a dog too. Thanks for your input!

Llonghair, I can't do Epsom salts but I know it does help some people. I have capillary permeability and it's not the best thing for that. Good grief, I sound so contrary! I think what I need is a handyman. Or a maid. Or a chef. Or all of the above. I need that kind of help big time.

Thanks, Ashleigh. I haven't heard from you for a long time. I hope you're doing okay.

H.I., I had to laugh when you mentioned being cool. If you had any idea how freezing cold my apartment is . . . I fight to stay warm. Yes, MGers do better when "temperate" but I can't do cold. I am not actually on Pred, only Flovent. I can't do Pred unless I tank. Lots of lovely side effects, like bad infections. I don't want to list everything, just trust me that it's not a good idea unless I want to be a permanent resident in a clinic or hospital. You guys better not hang on every word! I'm no genius nor am I a doctor. But, yes, adulation is pretty amazing for just being there. Thanks. My hair perfectly styled? Are you crazy? It's twirled up on top of my head and looks a bit like Einstein's hair (the closest comparison I'd ever get to him). I hope you're doing okay these days.

Sharon, Thanks for being so honest. It's hard to admit how worn out MG can make you. I'm glad prayer is a good coping mechanism (and more) for you. There are many other ones, which my psychologist helped me with for a number of years, but there are days when screaming works too. Or throwing a ball across the room, if your arms work. Or blasting good music. I usually stay pretty "zen" daily but, come on! This nonstop BS is way too much. MG is bad enough. If I only had that to deal with, I might be able to stop being so whiney, which is how I sort of feel. We Norwegians are fairly stoic and "complaining" is not exactly in our nature. I hate to generalize but that's my family!

I don't have answers. I get up each day, try to be grateful and do my best. It really does help, however, when people take the time to give of themselves, like all of you have. It's no small thing. I think people have forgotten - even with Facebook and Twitter - that it's not the quantity but the quality of interactions that really helps. And when you're sick, you truly know that not much else but that human connection matters. So, thank you for being there for me right now. It means more than I can adequately say.


Annie