I hadn't seen that Elinora.

Another bright young mind!

Thanks for the Info.

Elinora- Um... is this "experiment" going to make my stomach turn?

TristynB, thanks for sharing that article. I found it interesting, as my neuro put me on B1 and B6, as I am low on both. I haven't been very good about taking them, but now have a little motivation to see if it helps any.

My husband was diagnosed March 11. He had a droopy left eye, & double vision & a crooked smile & trouble chewing & swallowing . It was very frightening. He at first tried mestinon, & it made him dizzy & have bad dreams. He felt a lot stronger at first, but a huge let down afterward. We laid off the mestinon for a while. We live in Hawaii, & I took him to my acupuncturist. The acupuncturist is a medical doctor from Taiwan. She was able to correct his double vision in one session. We were SO great full. At first he went to acupuncture 3x a week, & his eye lid started staying up for longer & longer periods of time., now, after 6 weeks, he looks normal & can drive! Now we take a low dose of mestinon in am & PM - & 25 MG Imuran (small dose) each day. The acupuncturist is putting needles & giving him electrical stimulation to help his smile, his chewing, & also his swallowing - very slow progress on the latter - will keep you posted.

I thought it was interesting, too! It's not a miracle elixir or anything, but I've been taking it for about a week now and I've noticed some improvement. Namely, it nipped this double-vision episode in the bud for me. I take a B-complex that melts under the tongue.

Yea, call me crazy, but acupuncture helps with both my pain and myasthenia symptoms. Maybe it's placebo affect, but in the last year, if it cuts my need for pain meds or exacerbation meds, I'm happy. I go to an MD who doesn't practice Chinese acupuncture.. Just does the needles and a little electrical stim. Haven't been able to get there much recently and my myasthenia is a lot worse. Not sure if there's a real correlation or just true progression of the disease that would've happened anyway.

I am scheduled to receive physician administered acupuncture in the foot that was fused 2 1/2 years ago. I will report back on my experience.

BCC... I have personally wondered if my MG symptoms have worsened with my use of seaweed and am currently steering clear of it. My daughter has pointed out that MSG, which also seems to worsen MG symptoms, is derived from seaweed.

'More later!
Rosie

As mg presents itself so differently in people it makes sense that medications and management are as different and what works for one, does not for another. DS gives all the different ideas to consider. Very interesting.

since I don't have a classic presentation of MG (my weakness is primarily in my legs and respiratory muscles rather than my face) I couldn't get a doc to prescribe mestinon for the longest time!! it was out of sheer desperation that I started taking huperzine and amazingly it worked great- I started walking better just an hour or so later and I had a normal gait again the next day- for the first time in about 6 months. I did my research on it first to make sure that it was safe but I still felt like a guinea pig- but not much different than trying any new medication for the first time. I gotta admit that it's convenient to order my huperzine from amazon.com rather than dealing with the pharmacy and I always order from the same manufacturer. I finally got a prescription for mestinon just a couple weeks ago- and it works as well as my huperzine but the effects wear off much quicker. now I can tell the next neuro that my symptoms resolve with mestinon rather than some "supplemental crap" that he's never heard of and doesn't really care to learn about.

There are couple of alternative treatments reported on internet but none of them is reliable and has no evidence of relief for MG. Till last year I used to see Ad for some MG Tabs. I dont see it any more. There are reported herbal treatments in Indian (Ayurvedic) and chinese system. There are reports of Acupuncture also, but again no evidence that any one got benefit out of it.
I will describe my experience with these drugs. I was diagnosed with MG in 1993 and got operated same year. I was symptoms free in 1994 (complete remission) till 2004. After 2004 my symptoms slowely started coming back and 2008 was worst year for me. After avoiding so many years, I had to start Prednisone in 2008. Because of my desire to stop prednisone, i got herbal medicine from India. After taking for 4 months I was able to completely stop prednisone and mestinone. I was without these drugs for 4 months but than my symptoms came back (things to mention here that i was continuously taking herbal medicine). It is difficult to say that my symptoms were off because of herbal medicine, because MG symptoms can be on or off by itself too. It is highly unpredictable. So I had to start prednisone again and taking it regularly after that.

There are something more of my experience. I tried 6 treatments of acupuncture at the begining of 2012. The doctor who was giving treatments had no experience of MG. but he was trying hard by reading and on the basis of symptoms. I didn't feel any improvement.

Now, 1 month back one of my friend persuaded a chinese doctor from Taiwan to prepare a herbal extract for me. He prepared and sent it to me. I was not really ready to start it because I want to change job and any symptom will be a problem during interview. I am planning to start it now. I will post the outcome of this medicine in few months. I have medicine for 3 months.

Is there anyway of knowing for sure if you have this?

This doesn't seem like the thing you can be guessing if you have, and it seems

And I don't get it... if you have it, do you just sit around worrying if you'll get the worst symptoms?

Unless I'm missing something how could someone with this possibly live normally, and be a spouse and raise children with this?

This would make more sense if it more prevelant in the elderly or someone who has had years of a compromised immune system by way of drugs, etc.

I don't get the younger cases or those who are generally healthy. They say stress. But life is stressful.

Yeah you can try to avoid it, etc etc etc. but theres no way to fully avoid it. Esp if you have family and children. It must be stressful being so limited, all on its own.

To treat MG you have to get your immune system to stop or decrease the production of antibodies that attack your neuro-muscular junction (the connection that lets nerves send messages to muscles). The goal is to make the immune system weaker!!!
All the wonderful diets, supplements etc., are likely to do exactly the opposite -- make the immune system crank up even more ambitiously and make you worse. Definitely the opposite of what we normally hear about doing healthy things.
So I would suggest doing everything that your mother and grandmother said you shouldn't do, and you will likely improve rapidly ;-)

Here is a great reference "10 ways your harming your immune system" http://www.prevention.com/health/healthy-living/10-ways-youre-harming-your-immune-system
Just do the opposite of what they say and maybe your MG will go away naturally. (Ha Ha).

I am currently on some natural remedies, but the are not specific to MG. i was told that in any autoimmune diseases it's important to take turmeric, omega 3 and vitamin C. i have other issues, like i am cold all the time, cold hands and feet, i can't eat so many vegetables (beans, peas, celery, cabbage, broccoli, corn, parsley root, cucumber etc) because they give me gases and then my intestines push on my cystic ovaries(unbearable pain) so my neurologist started me on a combination of those mentioned and some plant extracts. i feel better, it doesn't interact with my mestinon. but what i noticed is that if i have half of an avocado and a banana a day, i feel amazing. i also eat a lot of seeds and nuts as snacks and drink 3 litres of water a day:)

Please do an in depth study of the effects of Vit. D3 on autoimmune diseases. http://www.vitamindwiki.com/Autoimmune