Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 08-19-2013, 10:06 AM #1
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Default New and have question

I am new to this site. Has anyone tried homeopathics for MG?
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Old 08-19-2013, 12:39 PM #2
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I did. They did not work.
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Old 08-19-2013, 02:16 PM #3
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Question Myasthenia Gravis

19 August 2013
Monday

New Seventy-One Year Old who has an appointment at Duke for EMG test for Myasthesia Gravis one month from today. Have had the double vision for three years and ALL the rest except the droopy eye for three years. Seen like a dozen doctors, three at Duke, and if I did not see two of them it was a joke. Finally I feel like the calvary is on it's way. I also feel like I did waiting to see if I was pregnant or not back in the dark ages. I'm a wreck!. Ms. J
Hope I did this part correctly!.
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Old 08-19-2013, 07:48 PM #4
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My sister had 2 bad experiences at Duke. First time at ER second time with leading MG expert. You found the right site for help.
Mike
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Old 08-19-2013, 08:07 PM #5
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I have found that a nutritional diet does make me feel better. MG is exhausting and a high protein but light diets does help with the endurance. I also eat in 6 meals instead of 3. This helps with getting all the meds down too.

I eat a high protein diet. Since I have trouble chewing meat, that means a lot of fish and eggs. I also eat alot of soft easily digestible fruit such as berries and melons, nothing that has to be chewed a lot. I also eat a lot of yogurt and soft over cooked (mushy) vegetable like potatoes, carrots, peas etc.

I really miss my salad. I cannot eat that anymore. I have found that not over tiring myself by eating difficult to chew and swallow, reserves my energy. When I tried to eat meat, It was exhausting to chew, choking while swallowing exhausted me even more and I wold have to rest 2 hours after dinner. Eating small light snacks reserves my energy for more enjoyable things.

I do supplement with fish oil, and calcium with D. A lot of MGer have a deficiency of B12 and D.

My big treat is ice cream at night. Don't tell my GP.

If you find anything that works for you, let us know.
thanks
kathie
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Old 08-20-2013, 07:11 AM #6
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I also do the ice cream at night. It doesn't help my MG, but it helps my attitude!
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Old 08-20-2013, 09:13 AM #7
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I haven't tried homeopathics... I do have a weekly acupuncture appointment that does help keep me in line! I do a few ayurvedic things but that is always hard to explain how it helps, lol. I also have a gluten free diet, mostly dairy free & soy free- but I "cheat" on those when I am out with friends & try to not be the person that can't eat anything- but that doesn't happen too often. I also eat fish & eggs, but high protein all day has never done it for me. I am a moderate protein, tons of veggies. I never realized how I have geared my food around less chewing, but looking at how I eat- def pref for more soft foods & less chewing! I also have b-12 deficiency since I was 19(presumed EDS related), I need to do shots weekly to keep my levels in check. When I remember I take my fish oil and a mast cell stabilizer called Quercetin. I usually only take my other vitamins/minerals when I travel and can't cook for myself to ensure I am getting a bit of everything!

I love the so-delicous coconut cream ice creams. I also have an ice cream maker, haven't busted it out lately but would love to have enough energy to start making my own again!!
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Old 08-20-2013, 03:22 PM #8
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What is your recipe for the coconut cream ice cream, i will have to add dark chocolate.

thanks
kathie
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