Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and swallowing are most frequently affected.

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Natural healing strategies anyone?

Hello there, I'm new to this forum. I was dxed 7 years ago with ocular MG. I was lucky enough to go into remission after only a few months. I cut gluten, dairy and sugar out of my diet and also took supplements including plant sterols (Moducare).
A few months after the birth of my second son last year I began to develop arm weakness and sometimes I would get double vision. Now it has progressed and I get leg weakness, have difficulty chewing, difficulty using my fingers, and can hardly hold my 1 year old. I'm trying to heal naturally again - I know my body is out of balance. A couple of juice fasting stints helped me a lot, as did a raw food diet when I did that for a couple of weeks... it's just hard staying on it when you're busy with 2 energetic kids and work! I'm seeing a naturopath who just put me back on moducare, so we'll see if that helps again. I'm also thinking of doing a grain-free, dairy-free diet (Paleo diet) after some more juice fasting.
I recently found out that I am low in Vit D (that's how I found this site!), so I'm supplementing with 4000IU/day

I'm wondering if anyone has any tips that have been working for them?

Replies

Jules3391
Jules3391

I know MrsAga here on DS has had some amazing trials and results with natural therapy/strategies. Her website is www.lifeologia.com. Her website has a journal of all that she has done and what has worked for her. Hope it helps.
cgreens
cgreens

Let it also be known that Mrs Aga had a thymectomy, does take mestinon, and is not symptom free. There is no science to back up any of these diets to help MG. I assure you. Thanks for the link, which is the same from her profile, and her last post about her dieting to help out her MG was over a year ago, and she has been "working at it" for quite some time.

That being said, if you feel better doing these things, and get that "placebo effect" out of these diets etc, than who I am to say otherwise. I just want to point out there is no science to back up any claims of ridding us of mg.

MG can retreat on its own and sometimes does so quickly. There is science to point that out.

Disclosure:

I do take an organic vitamin to help with my stress support, digestive support, immune support etc...

Best wishes,

TJ
organic1der
organic1der

Thanks Jules, I've nver heard about that - I'll look it up.

TJ, thanks for your response. I have a different outlook on diet than you do. I believe that diet helps tremendously for myself, and I don't believe it is the placebo affect. I have many symptoms that seem to stem from food sensitivities. I would argue that there is science that backs up different diets and nutrition... the problem is that it is not recognized by mainstream conventional medicine because there is little money in the research. Most medical research is funded by pharmaceutical companies because they are looking to create products to sell to us or patent and make money. There is little money in nutritional science that tells us we can be prevent and treat illnesses with plain, healthy food.

Conventional medicine is a reductionist science with many holes. I'm not saying that it has no place, but I do believe that it leaves a lot of information out of the equation simply because of the paradign through which it tries to explain health and dis-ease. Where I feel frustrated is when most doctors close their minds to seemingly ANYTHING naturopathic. I'm not trying to discount their knowledge, I'm trying to add all the tools I can to my arsenal against my MG.
When they know there is a link betweeen stress and autoimmune disorders, but then refuse to acknowledge adrenal fatigue... there is a HUGE disconnect there.

In the end, every body is different. All of us autoimmune sufferers likely have different triggers that brought it into our lives. No one trick will heal us all. But, if I can find a way to re-balance my body's systems, so that it no longer feels the need to make antibodies that attack it, then I'm going to search for that. To say that something that helps me is a placebo is ignoring every MG sufferes unique situation, and puts a blind faith in conventional medicine which itself does not understand the causes of MG. Until conventional medical culture can be more openminded towards nutrition and the synergistic effects it has on systems of the body, I don't think they will understand either.
newmugg
newmugg

Regarding Vit D, I take 5,000IU Vit D3 with 45mcg K2 (as MK7) 3 times a 4 times a week and double up the other 3 days of the week.
I try to press 4 oz wheat grass (when I can get it) and juice a green drink daily. I admit I am not gluten free and still eat some processed foods. I also try to stay pretty sugar free. I agree that a clean diet would benefit most everyone, especially those with autoimmune disease.
~sherry