The effect it had on you sounds real and also fits with some of its know pharmacological actions.

http://www.ncbi.nlm.nih.gov/pubmed/17509559

I also know that astargulus is considered as traditional Chinese treatment of myasthenia. But, only in certain sub-groups of patients. ( I have no understanding of chinese medicine so don't know how this choice is made, other than what is written in the integrative medical literature-Pi deficiency, which is chinese to me).

I do not know how safe it is (short or long term). The meticulous studies and safety parameters that apply to medications in the western world are not, to the best of my knowledge, required for Chinese herbal preparations.

I know that there are some on-going early phase studies of this herb in cancer patients, which suggest that it is safe, but there is not enough conclusive data yet.

I would regard it as any other form of experimental treatment.

Thank you Alice. I appreciate this information very much, and appreciate even more than the info, that you didn't criticize my choice for self-treatment, I somewhat expected criticism.

I do see why this herb is promising as a treatment, but I don't feel comfortable using it more often than I mentioned above due to the headache. I do think my symptoms have improved some since trying astragalus and plan on drinking it weekly again if I start having crashes again, but I will not be drinking it regularly as I don't think it is safe to use daily. Of couse, I am no expert with herbs, herbs as medicine is a family tradition and hobby of mine and that is all.

I'm so thankful not to be spending time laying on the floor in a puddle of my own drool because I can't move (sorry, I know that is gross, but it has happened to me many times after overdoing it), I'm so thankful, brings tears to my eyes remembering those times on the floor. I do think this lessening of my bad times is due to astragalus and other herbs, vitamins and foods...not that there is any cure to be found in these methods, but I do see more stability to be found in them over the Mestinon, especially since my MG is not considered severe. I am thankful for mestinon, too, because it helps me through those absolutely worst of days, but am extremely tired and frustrated (and angry at times) with the ups and downs associated with it. For me, the better I feel one day, the worse I expect to feel within the next few days when taking Mestinon...I'd prefer a steady middle ground, and I think I am finding it (said quietly, MG is so unpredictable, don't tell the MG I said this, it might punish me, lol). I am down to 1/8 of a Mestinon pill every 2 or 3 days, and while I definitely still have MG symptoms they are manageable and haven't had me in bed or on the floor for a while now. I feel as if I am healing and it feels good.

I am starting to ramble...I am trying to say thank you to the food, vitamins and herbs, I know they have helped me.

I do feel uncomfortable about possibly encouraging someone to use astragalas. For anyone reading this, please be careful, as Alice said, this is an experimental treatment and might not be safe for everyone.

Happy Thanksgiving to all.

.

All I can say is : Ha?! not considered severe by whom?

Completely normal to feel that way. The hardest thing about MG is it's total unpredictability. Or as my neurologist calls it "a crazy disease".

I had the same kind of response to mestinon, and that is why I stopped taking it. The crazy fluctuations of this illness were enough without adding the mestinon fluctuations on top of it, mostly that it also became less and less effective with time. My neurologist now suggested trying a low dose of mytelase (another acetyl-choline esterase inhibitor, with a some what different mode of action) that I have been taking for the last two weeks and so far seems to have less of this effect. (but as you know too early to be sure).

I am also take long acting ventolin (vospire) , which has a somewhat similar mode of action to astaragulus and their side effect profile is better known. It was another one of my neurologist's brilliant ideas-to give me cough syrup (which contains a small dose of ephedrine) when I crash. Although, when I tried to take it on a regular basis it made my symptoms much less stable. (which just shows you what a crazy disease this is!)

I have reached the conclusion that it is a fine art to figure out and adjust the optimal treatment for this disease, and very few modern world neurologist have the time, experience knowledge and patience to do this. It is so much easier to blame it on your "emotional problems" or "lack of effort" or....

I don't think there is currently a cure for MG, but there are many things that can help in making it less disabling and less severe. Also, in my opinion using experimental treatment is justified (in any disease) whenever commonly used treatments are not effective or not tolerated due to severe side-effects. preferably with the supervision and guidance of a physician who has knowledge and experience in this disease.

My neuro tells me that my MG is not severe because it doesn't effect my breathing. Even when I'm laying on the floor waiting for my energy to return, I do seem to be breathing okay and thinking clearly, too. Somehow that makes all the difference to my neuro.

Thank you Alice for your support. It really helps me feel less crazy.

You are definitely not crazy, (but I can understand why you feel so).

I would find what you say amusing if it wasn't sad.

I was told that such severe weakness and breathing difficulties like mine can't be MG, unless you are in crisis, and I am not in crisis, because someone in crisis is much more ill than me.

makes sense, doesn't it?

Just as much sense as what your neuro says.

As you know I chose the name "Alice" because this illness made me feel like I am "Alice in wonderland" and some of those neuros made me think I was in the mad hatter's tea party.

"But I don't want to go among mad people," Alice remarked.
"Oh, you can't help that," said the Cat: "we're all mad here. I'm mad. You're mad."
"How do you know I'm mad?" said Alice.
"You must be," said the Cat, "or you wouldn't have come here."
(Alice's Adventures in Wonderland, Chapter 6)

This has given me many smiles tonight.

I think MG has sent me into my own version of Wonderland. In my long time spent resting I have learned to meditate. I often spend time meditating, focusing on various healing images and it seems to help me, especially since I have major problems with stress.

I recently had a long chat during meditation with a man who considered himself to be in charge of my immune system, I am going to call him my Inner Healer from now on. In my meditation/dream I complained to him about being weak due to MG, and he smiled big like the chesire cat and hugged me, then told me he had done that to me on purpose, that I wasn't sick at all. I think he even laughed. He told me he made me weak to prevent me from killing myself from overworking, that I hadn't been listening to his previous messages and it was the only way to get me to stop. He told me to trust him and that if I would be sure not to overdo it that he would give me permission to work part time (in the meditation dream, he gave me a part time job, lol), and he would reduce the weakness somewhat.

In this meditation session turned dream, I was given back my old job working at a hazardous waste incinerator, and I was told to only do what I felt comfortable doing. The funny part about this job was that I think the incinerator represented my body trying to heal itself, "burning" all the "hazardous waste".

You see, I've spiralled down into Wonderland , this is only one of my meditation experiences. I've decided to listen to the advice of my Inner Healer, and to consider MG my partner in healing, rather than the enemy I'm used to thinking of MG as.

So, Alice, I'll join you for tea...I think all of us down here in MG Wonderland are much more sane than many of the doctors who try to heal us (I'm joking - your comment made me cheerful, there must be a book somewhere in these MG experiences, a symbolic journey of sorts similar to Alice in Wonderland.).

What you said does make sense...well, in the fact that it doesn't make sense to say MG is not severe just because a person hasn't had a crisis, which is basically what my neuro is saying.

I am in the process of writing one...

I find this a wonderful way to deal with this seemingly impossible situation.
It turns the very scary and unknown into something familiar we have dealt with before. Also gives us some sense of control. Children do this all the time. Grown-ups only do it under extreme circumstances, or need special techniques like meditation.

During my respiratory failure episodes (shortly before my pulmonologist realized the severity of my condition and gave me a respirator) I had similar discussions with the angel of death (probably, brought about by the effect of CO2 on my brain). I was truly hallucinating and actually saw him standing on the window sill. He promised me that my professional skills will help me, just like they have helped my patients. But, he also explained to me that, just like my patients, I do need another physician to take care of me and can not keep on fighting him on my own. He reminded me of a previous encounter a few years earlier (When I was hospitalized with a myasthenic crisis) and said that he can't keep on sparing my life, if I don't do my part as well.

He also made fun of me for being let down by some physicians not believing me. He reminded me of times I argued with arrogant colleagues who refused to do what I thought was required for my patients. He said I don't have to tell them I have met him (which would obviously make me appear crazy) but I do have to fight to receive proper care.

I think that under such extreme circumstances our mind recruits everything we have stored in our memory to help us transform it into something we can deal with. And also help us make practical decisions about what we should do, in an overwhelming situation.

I think many neurologists find it hard to comprehend the extreme fluctuations of this disease. Not all of them are honest with themselves to admit that this is such a crazy disease they don't really understand. They do say it, but don't fully understand what it really means.

This, for instance, was written in my chart during one of my hospitalizations, after I had a severe and rapid deterioration when the dose of the steroids was increased, and the effect of plasmapheresis started to fade off:

“Having episodes of weakness. Unable to walk or swallow. Patient very scared. Has been on BIPAP once. VC=1.58. Dr. B informed who does not want to see patient. Dr. F. early thought weakness may be functional.”

"patient appeared to be sleeping when I went to give her the 23:00 dose of pyridostigmine. patient appeared very weak, not speaking very well and unable to raise her arms above the bed. unable to record VC. Bipap applied and patient observed over night."

This was how one of the physicians involved in my care interpreted it (in an e-mail she sent to a colleague, who wanted to receive information):
""When this patient was admitted here 2 years ago with SNMG, there was a general feeling that she had generalised MG plus some anxiety/depression?, which did not help much in her evaluation and treatment. It appeared to us clear that she responded to PEX, but she was possibly intolerant to steroids. "

When I asked my current neurologist if he has ever seen a patient like that, his answer was- yes, I have seen quite a few patients with myasthenic crisis. And it is not at all rare for patients with MG to go into crisis following treatment with steroids.

He didn't have any reasonable explanation (and neither do I) why those neurologists in a large MG center, couldn't just see the simple facts, and had to give such unreasonable explanations for what they could clearly see in front of their eyes-A patient who rapidly went into crisis following treatment with steroids.

I think neurology is one of the hardest and probably most fascinating fields of medicine, and only extraordinary people can truly deal with it. unfortunately, most neurologists are not extraordinary but very plain and superficial people. They don't have a deep understanding of the diseases they treat, the tests they use, not to speak of how those diseases truly effect the lives of real people.