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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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06-17-2010, 10:19 PM | #41 | ||
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Grand Magnate
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I need to say that you guys are getting into areas that are highly complex and involve multiple body systems. Everything you are suggesting here that is supplement-related depends on a variety of things from a person's individual metabolic rate, to their overall health, what other drugs or supplements they are taking and the doses involved. Not to mention that many of these OTC's are not FDA approved or regulated.
Sure, it's great to discuss things that "might" help our immune systems but this is almost bordering on saying that they will cure MG. It's dangerous territory to give false hope to patients. No, I'm not saying that's what's being done but you don't know who could be reading this and will blindly take supplements without speaking to their doctors. I'm all for using sensible supplements, seeking out 2nd opinions on alternative therapies, etc. But I hope you guys will realize that MG, and any traditional or alternative treatments, are not a "one size fits anyone" disease. I'm glad you have found things that work for you, Aries51. It may not work for others and the risk involved for others in "trying" may be too high. Annie |
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06-19-2010, 05:31 AM | #42 | ||
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Junior Member
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Quote:
Thanks, Rob
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Please forgive what may seem as short or terse tones in either my questions or responses. I two finger type so I tend to keep things short and to the point. Takes WAY too long to type flowery phrases. No offense EVER, EVER intended. |
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06-19-2010, 06:35 AM | #43 | |||
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Junior Member
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The "risk" factor - if any - is not for you to decide for anyone else. Clean up your diet? Stop eating garbage and foods you may have an intolerance for? Be sure you have sufficient nutrients for key glands and body processes? Be patient, persistent, positive and give your body time to heal? Wow, that IS risky. I'm glad I didn't try that. I might have gotten better if I did.
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Please forgive what may seem as short or terse tones in either my questions or responses. I two finger type so I tend to keep things short and to the point. Takes WAY too long to type flowery phrases. No offense EVER, EVER intended. |
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06-19-2010, 08:08 AM | #44 | ||
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Grand Magnate
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I do have the right to my opinion and to not be personally attacked for it.
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06-19-2010, 08:56 AM | #45 | |||
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Member
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Annie, no offense, but that works both ways. I think that Rob feels like YOU attacked him FIRST.
He DID make it REALLY clear from the beginning that this was HIS way -- and that we should tread carefully -- and research -- and that it might not work for us all. Annie, I know that you don't read ALL of the posts with as much clarity when you aren't feeling well -- you have said as much. I think that you may have missed when Rob posted this. There is ROOM in this forum for ALL points of view -- we NEED all points of view if we are EVER going to SOLVE this MG puzzle. We do NOT have the same symptoms OR test results -- there cannot be ONLY ONE ANSWER!!! PLEASE -- can we STICK TOGETHER -- AGAINST the "wicked" neuros (but, NOT against my sweetheart neuros -- whom I love dearly)?!?!?!?!
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~jana |
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06-19-2010, 09:30 AM | #46 | ||
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Grand Magnate
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Jana, I did not attack Rob and I very clearly stated that he has the right to do whatever he wants. Maybe you should both reread what I wrote.
I may not read all posts but what I do read is quite clear. My mind is the only thing left that does work. I was trying to bring some balance into the conversation about supplements. What's good for one person is not good for another. I even said I was glad it has helped Rob. That is one reason I do not talk about exactly what I take on a daily basis. It's up to each person to decide that, WITH their doctors. And, no, the FDA is far from perfect but the companies out there are even farther away. You don't even want to know what the conditions are in some of the production facilities. If Johnson and Johnson had deplorable manufacturing conditions for products like Tylenol and Benadryl, I'm sure you can imagine. And, believe me, if I wanted to or even had the desire to attack someone here - which I don't - you would know that I did. That is not what I did. I examined a "position" on a topic. I did not attack the person behind it. There is a HUGE difference. I was being civil and responsible. And I am now done defending myself. |
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06-19-2010, 10:36 AM | #47 | |||
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Administrator
Community Support Team
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if there is room for all points of view, then why would someone be jumped on for expressing theirs? Posting a personal viewpoint of caution is not attacking, but singling someone out with those replies that followed gives that perception....
as this thread seems to have deteriorated into such an exchange, we feel it is best closed
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~Chemar~ * . * . These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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