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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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I am wondering if anyone has tried Astragalus root as a supplement. I have considered taking it for about a year and have become serious about it recently. I would like to hear of positive, negative or neutral results from a real person.
Here is one link to information: http://www.ncbi.nlm.nih.gov/pubmed/19526753 Previously I found an article that suggested astragalus could reduce the number of acetylcholine receptor antibodies, but I can't find the article tonight. I understand that many people are hesitant to try herbal supplements. We should always be careful and I am not suggesting that anyone else try Astragalus. I also don't need to be warned, I understand the risks, many herbs are drugs, too. I hope everyone is doing well...
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Dear, how was your experience with Astragalus ? Could you please share it with us.
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"Thanks for this!" says: | DesertFlower (11-24-2011) |
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"Thanks for this!" says: | DesertFlower (11-24-2011) |
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I tried Astragalus tea, and am not sure how helpful it is. It seemed to make so that I had less ups and downs in my symptoms, which was nice but I found this result odd. It truly seemed to make so that I had no crashes but it also limited my extra good days. I drank it as a tea once a week for about three months. I still drink it on occasion, when I feel weaker than usual. I think my symptoms have steadied off with the help of this tea, but definitely have not gone away. I noticed a definite decrease in the number of times when my body goes suddenly weak and I end up on the floor, but, you know how MG is, maybe it was just one of my better times. I don't want to come to a concustion without trying it weekly again for a while. I did experience a side effect...when I tried astragalus tea more often that once a week it gave me minor headaches, which is why I decided to stop drinking it regularly. Headaches are not a good sign. In my experiments with tea and herbs, I discovered that Red Raspberry tea does wonders for MG (no miracle cure, lol, just helps ease the symptoms some), much more than astragalus or any other thing I have tried besides magnesium and vitamin B12, and with no side effects at all, and helps with other things, too, such as menstrual cramps (no pain at all!! The most amazing thing if you are a woman!). Of course, I am not a doctor, and don't want to recommend anything to others...please talk to your doctor before trying any herbs. My neuro told me to go ahead, but also told me that there was nothing he knew of that would be helpful, and so I experiment slowly. I do wish I knew more people who tried herbs and foods as medicine...but please be careful if you do so. Thanks for asking Rdmorena. ![]()
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#5 | |||
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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. |
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"Thanks for this!" says: | DesertFlower (11-24-2011) |
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#6 | |||
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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. ![]()
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. Last edited by DesertFlower; 11-24-2011 at 01:32 AM. Reason: when I hit enter while typing, the post saved..edited to finish my post. |
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#7 | |||
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All I can say is : Ha?! not considered severe by whom? Quote:
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. |
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"Thanks for this!" says: | DesertFlower (11-24-2011) |
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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.
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#9 | |||
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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) |
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"Thanks for this!" says: | DesertFlower (11-25-2011) |
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![]() 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 ![]() 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.
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