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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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03-26-2015, 04:31 PM | #31 | |||
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Junior Member
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No offense taken, AnnieB3.
I wasn’t suggesting anything. What I did was share my experience, which is the purpose of this Forum - is it not? I did not say that “manganese alone will ‘cure’ MG” (your words). What I said was: “I think the Manganese plus change in diet has benefitted me greatly“ ... and that I am feeling better. Nutritional therapy is working for me. How can you dispute that? In the book that I referenced, “The Thymus, Manganese and Myasthenia Gravis”, the author documents the improvement experienced by several of his patients when manganese was added to their therapy. As for ‘no scientific basis for the claims being made’, I believe that patient experience, with regard to solutions and significant healing, is quite instructive and proof enough that the manganese protocol has worked and is working. How can you argue positive results? As for ‘critical reviews’ of the monograph: the medical and pharmaceutical industries have vested interests in promoting the current accepted practices vis a vis MG. I don’t expect an unbiased review any time soon. And why would you mention cancer? That comment is totally unrelated to my post. I’m of the belief that ‘one size does not fit all’. What works for me may not work for you, and vice versa. |
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03-26-2015, 08:02 PM | #32 | ||
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Junior Member
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Thanks Annie! I didn't see this earlier! I have a GREAT husband which is about all I can ask for at the moment. At the moment we're still trying to figure out exactly what's going on. I'm still on a presumptive diagnosis (positive repetitive stim test and borderline modulating antibody test) but neurologist keep saying I don't present like a "typical" MG patient but that (this is at a big medical hospital) but I respond to the IVIG). I'm seeing the head of the Rheumatology department tomorrow to hopefully figure out more of the puzzle. I'm far from stable and my meds aren't right and won't be until all or most of pieces are figured out, so fingers crossed !.
Last edited by rockenmama; 03-26-2015 at 08:19 PM. |
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03-28-2015, 02:25 PM | #33 | ||
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Junior Member
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Not wanting to get into any arguments but did find this.
Quote:
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03-30-2015, 01:07 AM | #34 | ||
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Junior Member
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I have MG since 2006. It was diagnosed after numerous visits to the emergency dept at the Hospital. My eye lids kept closing as people approached me. Initially I could see them but as they got closer I ended up looking at their feet. Blood test etc showed nothing out of the ordinary. The Neuro tested my wrist by getting me to bend and straighten them. After the fourth time I could not use them at all. He prescribed Mestinon and this was like a miracle drug at least for 3 hours until the effect wore off. I was put on a High dosages 4 times a day until a couple of years ago then swopped to Azathioprine until December last year. I am now on Mycophenolate 2 times a day.
I get bad leg cramps when it is very cold and during the summer I have to avoid being outside due to an Intolerance to the heat. I have tried numerous methods to stop the cramp but cannot do it. My Ideal heat is 17C. My only solution at the moment is to avoid getting too cold or hot. Every day is different with MG some days are bad and others really good. Regards and keep safe |
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09-29-2015, 11:36 AM | #35 | ||
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New Member
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I have stumbled on a treatment for the night leg cramps & fasciculation, low-fat yogurt and a banana with a splash of 2% milk. I've had no night cramps for going on 3 weeks now with the exception of the night I tried no-fat yogurt. So, fat is good!
The dose for my 230 lb. frame is 3 tablespoon-sized dollops of yogurt, a whole banana, and 3-4 oz. of 2% half an hour before bed. I'm good for about 9 hours! I got the idea from a posting here. A couple of folks mentioned a Calcium-Magnesium-Potassium supplement as helping. Those supplements only have something like 30-20-1 mg, respectively, so I went with real food that had tons more. Works wonders for me. For the comparison, I take 10x60mg daily, 2 every 4 hours starting at 9am. So, last does is at midnight-ish with the yogurt (sometimes I add rice crispies & raisins!). I can sleep without a single cramp or twitch/fasciculation for almost 9 hours. However, the twitching starts almost immediately 9 hours after the "dose", but I don't get cramps. Without the "treatment" I would be awakened each night with severe calf, arch, or thigh cramps around 3 or 4am, about 4 hours after the last dose of pyridostigmine/Mestinon., which is about how long it takes for a dose to wear off, right? With the treatment, I get enough twitches to awaken me 9 hours after the "treatment." I've tried taking mestinon at the 7am "pee call" to see if that changes the timing of the twitches. It does not. I'd be interested in hearing if this concoction works for anyone else. Thanks, Clarke |
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