Those are two stories of patients with MS (it's not MG, but they face similar dilemmas regarding treatment sometimes). Both did not respond to the currently available treatments, and both became severely disabled. Both were not ready to give up and both were ready to try an experimental approach.

One chose to receive experimental treatment-stem cell transplant- with potentially severe side-effects and unknown long-term outcome.

http://www.youtube.com/watch?v=G2VeFFMnZco&feature=plcp

The other chose to experiment with nutritional supplements and dietary changes. This treatment approach also has unknown long term outcome and potential side-effects. (some nutritional supplements may possibly increase the risk for cancer and there may be other yet unknown consequences).

http://www.youtube.com/watch?v=Fs7jqqdv5eg


Both had a significant improvement in their condition.

Patients who do not respond to commonly available treatments and/or have unbearable side-effects can choose to receive experimental treatment.

Stem cell transplant, nutritional supplements and any other such treatment has not been tried yet on a significant number of people and there is little data regarding response rate, long-term results or the risk/benefit ratio.

We usually hear more about those in which those interventions were successful than those in which it was not.

Such patients can also choose to come to terms with their illness and prefer the known risks of the illness to the unknown risks involved in experimental treatment. And people can also change their mind over time.

I don't think there is a right or wrong approach. I think every one has to find what is right for him/her specifically. As long as he/she is fully aware of the implications of each approach and has made an informed decision.

Alice, I noticed that no one replied to your post. What you brought up is quite fascinating.

I know that some people dismiss nutritional or alternative therapies but there are so many studies on how it can help. That's not to say that making changes will get rid of MG but doing everything to help your immune system settle the heck down is a smart thing to do.

I think keeping an open mind in all things is essential. There's so much we don't know about all of this, including our own energy field. We all have an electromagnetic energy field, unique to each of us.

Thanks for bringing this up.

Annie