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