To Jana @ The Treatment Quandary
 

Jana, I haven't heard from you for quite a while. I hope you're doing okay. If not, I guess this will be for naught. Or not, if other people have some input.

You know very well the difficulty of being in a situation with MG where you can't do other treatments. Whether they're too risky, contraindicated or any number of other reasons, I can't do anything but Mestinon and rest unless I go into a crisis. Oh, and Free Trade coffee. ;)

Tonight, when I couldn't spin my salad because my arms gave up after four pulls on that easy string, I literally fell apart. I had gone out yesterday to get my hair done. That's it. Now today, my MG is bad. My definition of bad is O2 saturation not getting above 94% while lying down, having to lie down until your legs feel like working again, waiting for your brain to become alert so you don't hurt yourself more while doing something, not being able to talk and breathe at the same time, blah, blah, blah. Typing this took a lot of resting.

What goes though your mind when you get to this point? The bottom line for me is quality of life. Now, I know some of you might say that "trying" IVIG would be worth it if it helped that quality of life. I'm sorry but it's so beyond contraindicated that my life would be worse rather than better if I did. Same with steroids. I'm already on inhaled steroids from asthma, probably from taking Mestinon because it started after I started taking it! Or plasma. Going into too many details is not comfortable for me to do on the Internet, so I guess you'll have to trust me.

It's really hard not to feel utterly defeated every day. I have great coping skills but things are getting ridiculous. I'm "okay" as long as I don't go out but it always amazes me how on edge my "okay" must be since a little activity weakens me so much.

No lectures, guys. I've discussed all of this with my neuro, internist and other doctors. They agree and my neuro came to those conclusions about no other meds on his own. I am just bringing this up because I need support for a change. And because a conversation with Jana would help and I might get some suggestions from everyone else too.

I am so incredibly sad right now. No, that doesn't help MG either. This is my life but at times like this I can hardly feel good about it. For those of you who know me, you know how positive I am, grateful every day, and how well I can normally deal with anything.

Any MG suggestions, beyond meds, to make this better? I NEVER ask for support unless I really need it. I'm at that point where a person wants to give up and that's certainly not in keeping with my Norwegian, tenacious character. But, honestly, I'm not who I was and never will be.

No pity party just one of those times when it's all too much. Thanks.

Annie

Annie,
I don't know what to say, but I wish that I could give you a hug. Feel free to PM me if you want somebody to talk to. You have always been a huge help to me. I care. We care. :hug::grouphug:

Hi Annie

I can't claim to know you as I have only posted a few times but I have been a 'reader' of this site since I was diagnosed last May. You in particular have helped so many people with your knowledge and encouragement and certainly I have learned so much from your posts.

A couple of weeks ago it was noticed that you hadn't popped up with your usual helpful posts and a thread was started enquiring if you were ok, then back you came - up and running again !

I can't offer you any advice on how to deal with what you are going through, I and many others in maybe not such a sad place as you are at the moment have been brought so low with this condition that you wonder what the point of things are, but you are such a positive person and I know that deep down you have the strength to beat it. It is presumptuous of me to speak for others on this site as they can all be relied on to speak for themselves but we do all wish you every ounce of support that we can muster and pray you get over this very difficult period.

Luv Lynne

Hi Annie,

Things must be bad if you are asking for help and support from us.

In the 5 years I have known you through this forum I have never seen such a post from you.

I would never have got the answers I needed without your help and there are a lot of people on this forum who are in the same boat.

It doesnt matter who the person is you extend the hand of friendship and offer advice and support.

I think we need to show Annie how much we need her and love her so that she knows we all care about her.

If anyone has any advice for Annie please post and dont be shy! Annie never ever asks for help so come on help her

Hugs
Rach

I guess the only thing that keeps me going is "hope." I hope scientists will figure out how to conquer Myasthenia Gravis. I hope that not everything that I love will be taken from me. I hope that I have a future. I hope that tomorrow I'll feel better than today.

Don't get me wrong sometimes I forget to hope and feel imprisoned in my own body. I constantly have to remind myself that there's always a chance that things will get better. I have to believe this. I need to believe this.

Hope is the only reason I've made it this far in my life. Beyond MG, I've suffered many trials in my life which might have destroyed me if it weren't for hope. Childhood abuse, abandonment, spousal abuse, being a single parent of four daughters and working several jobs at a time to survive.

I know there are some who have gone through more trials than I have and I've seen them survive through hope and I'm sure you have some hope too, but maybe you're like me and need to be reminded that hope exists.

I hope this helps...

Annie,
I am so sorry you are feeling so bad. Please try not to give up. You are much needed here.:grouphug::grouphug:

Hi Annie, :circlelove:

I wish I could say or do something to help you feel better. Please have a virtual hug and lots of loving thoughts sent your way from us on the board. :grouphug:

As thorough a knowledge as you have with mainstream medicine and its treatment of MG, I can only think to look toward the alternative.

Since the fringe edge of some of the symptoms might be aggravated by underlying health issues such as your other autoimmune issues, I would systematically go through eliminating alternate possible contributors to fatigue and weakness (e.g. dehydration, mineral imbalance, inflammation). CyrexLabs http://www.cyrexlabs.com/CyrexTestsA...6/Default.aspx does testing for Gluten-Associated Cross-Reactive Foods in case there are foods or substances (besides gluten) that could be triggering a reaction in your compromised immune system. I've found similarity between the gluten-associated cross-reactive foods and some anti-inflammatory diets. Coconut water is an excellent way to stay hydrated. I think I saw somewhere you already take plenty of fish oil. Some people take turmeric for systemic inflammation (not recommended if you have vitiligo), also manuka honey which deals primarily with systemic inflammation but also supports digestion and has antibiotic properties. Since fat is important for brain function and its deficiency can affect hormones which can aggravate weakness, healthy fats would be coconut oil and avocado, and seeds & nuts such as Brazil nuts (if you're not sensitive to them). I've managed to avoid looking into alternative methods specifically dealing with MG, but perhaps someone else on the board has additional insight or ideas that could help...?

Wishing you love and comfort and strength to last through the grey days.
:grouphug:

Annie, I am so sorry you are feeling down. But don't apologize for it. You have been everyone's strength. But you have earned a much deserved rest now, but don't quit. You are much more than this disease and a very formidable woman.

Life is all about balance and this disease has robbed our life of that balance. We are so exhausted in trying to manage every day simple tasks that there is no time or energy left for any enjoyment.

I can't coach you on any medical alternatives. But my suggestion to you would be to try and make room in some limited way to put back into your life the things you like doing. For me I love poetry, flowers and quilting. So I record quilting shows on the TV to watch them, and search for quilt patterns on the internet. Who knows if I will ever be able to sew a quilt again but I enjoy looking at them. I watch the travel show to places I will never go and gardening show although I cannot garden anymore. I treat myself to chocolate ice cream every night! I have always been a very spiritual person and I do believe it gives me the strength to hang-on.

Like many of us here, I have been to hell and back a few times in my life so I am quite familiar with the trip, but the journey is getting tiresome. I do not expect life to get better, I just pray it won't get worse.

As for why I keep hoping and trying, I think of the poem by G. Banks:

"I live for those who love me,
For those who know me true,
For the Heav’n that smiles above me,
And awaits my spirit, too;
For the wrong that needs resistance,
For the cause that lacks assistance,
For the future in the distance,
For the good that I can do."

So I live for those that love and need me. I think everyone here would agree that we both love and need you Annie.


:grouphug:kathie

ps. Do you have a pet? I have a little toy dog that is my constant companion. She curls up on my lap and won't leave my side during those long hours spent resting in the recliner. She is a great comfort.

Aww Annie, I was so busy trying to figure out my mom and remember all my journey that I didn't read anything else...so sorry...you are such an angel.

One thing I have done is read Dr. Mercola, Dr. Mark Hyman, Dr. Carolyn Dean and Mike Adams natural news. I am always looking for a better way to eat, better vitamins, things to make me sleep better.

One thing I started and I know everyone will say...that's not safe but I do think it might be for some. I read that we are all very deficient in magnesium. So, one day I tried some Epsom Salt in the bath and yes I did feel very weak the first time but made sure my husband was around. Then I did it a couple of times with more salt in the bath. I started to feel a little stronger each time and now I put 1 to 2 cups in almost every night and try to soak for 20 minutes. After I started this, I found I could ride a bike for the first time in years. Dr. Dean who is the expert said it is the intravenous mag we have to worry about.

The other thing I do every night is drink one cup of chamomile tea with 1 teaspoon of organic tart cherry juice. It relaxes and gives you melatonin all in one.

Tomorrow when I am fresh, I will think of other things...hang in there...I know you are a fighter! And you know you are loved :hug:

See you in the morning:grouphug:

Hi Annie,

I am so sorry you are feeling so low. Hang in there.

I agree you are much needed here.

Ashleigh

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! :grouphug:

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 :hug:

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.

:hug:
Annie

Hope
 

[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. :cool: 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. :rolleyes:

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. :hug: 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.

:grouphug:
Annie