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Old 02-15-2011, 09:25 PM #1
ucfsurfdave ucfsurfdave is offline
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Default Vitamins or other natural remedies

Anyone know or heard anything about certain vitamins that may help MG symptoms? My symptoms seem mild compared to some (double vision, eyelid, short breath are my only current symptoms) but was wondering if anyone know some things that may work besides meds. I am not against meds, im on mestonin right now but I want to do anything I can.
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Old 02-16-2011, 12:10 AM #2
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Vitamin B12 sublingual is often recommended. Also Vit D (since just about everyone doesn't get enough of this one!) and of course a multi every day never hurts.

AnnieB3 and Mrs. D have tons of knowledge about vitamins, minerals, herbs, and food products that can be beneficial (as well as others that are contraindicated or even potentially harmful). Try doing a search on some of their earlier posts.

Not a vitamin - but a wonderful boost - is coffee. It effects many MG'ers like Mestinon though not anywhere near as strong.

Ice packs will sometimes give short term relief to double vision. It makes my eyes focus better (esp, when my eyes feel like a spinning slot machine!)
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Old 02-16-2011, 03:15 PM #3
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Quote:
Originally Posted by ucfsurfdave View Post
Anyone know or heard anything about certain vitamins that may help MG symptoms? My symptoms seem mild compared to some (double vision, eyelid, short breath are my only current symptoms) but was wondering if anyone know some things that may work besides meds. I am not against meds, im on mestonin right now but I want to do anything I can.
As Sue said, vitamin B-12 is a good one.

I've found that the form methyl B-12 is the most helpful of all the vitamins I take.

Nothing helps as much as the Mestinon for me but I've found all sorts of vitamins, foods and herbs that help a little bit. We are all different so you will have to experiment for yourself to see what helps you.

A few things that I've found to help are:

Vitamins
B-12
C
E
Magnesium (but not magnesium oxide)
Omega-3
B Complex (in small quantities)
Zinc
D (15-30 minutes of sunshine daily when possible is my method for getting vitamin D )

I recommend looking through the vitamin forum:
http://neurotalk.psychcentral.com/thread85103.html

Foods
Green leafy vegetables
Fish
Nuts (except peanuts)

Herbs/teas/drinks
Coffee(in small quantities)
green tea
herba manta tea
liver detox teas
immune support teas
licorice tea
water - lots of water

I've also found that organic foods help more than regular foods, and avoiding preservatives and other chemicals found in processed food helps.

I've recently discovered that sugar, if I eat more than about 1 spoonful a day, makes my MG worse.

I am also starting to wonder if I am gluten sensitive/allergic, there are many people with MG that find that gluten avoidance is helpful.

Also, as noted in another current thread and elsewhere in the past, avoiding or reducing the amount of nightshade foods such as potatoes and tomatoes may be helpful...I've found this good advice to minimize MG symptoms.

It is helpful to experiment with foods to see what works for you. And let us know about any results you have. I am always looking for new things to improve my quality of life with MG, even the smallest improvement. I know I am not the only one.

So, yes, I do believe there are other things you can do to help reduce your symptoms.
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Old 02-16-2011, 06:48 PM #4
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Wow thanks. So many different ideas. I spoke to someone today at work and said that maybe I should go to an oriental market and talk to one of their herbal specialists about different teas. So diet really plays a big role in MG? My dr never said anything to me about that. I know a lot of water is good for all things in life, but is there a specific reason for MG? Why are peanuts bad? How come Vitamin B is so helpful?

Thanks and sorry for all the questions. Just trying to understand
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Old 02-16-2011, 06:50 PM #5
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Thanks. Why is water so helpful? Why no peanuts? How does Vitamin B help?

Sorry for the questions. Just trying to understand
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Old 02-16-2011, 09:12 PM #6
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Dave, First of all, do not take anything, not even over-the-counter supplements without talking to your primary doctor. Why? Well, they aren't "benign." Even foods can affect any drugs you take. And you can have food-food or drug-food interactions with anything.

If you do take any sensible supplements, try ONE at a time. That way, if you react to something, you'll know it's probably the supplement.

All I can do is tell you, like DesertFlower did, what I take. For a "boost" of acetylcholine in the afternoons, I drink a cup of coffee. On some days, two. Caffeine is a cholinesterase inhibitor like Mestinon is. The potassium in coffee is a good thing too.

I do take CoQ10 daily. It has been shown to help in some cases of MG but not with the MG directly. It's a complex issue, involving the mitochondria of cells and their energy producing ability.

I take a variety of other sensible supplements, including sublingual methylcobalamin (B12). I don't take them for MG's sake but for my general health. There are really no MG-specific vitamins or supplements.

Be very careful about herbs too. Without thorough research, you may be taking something that makes MG worse. And without knowing what your baseline status for things like potassium or magnesium, you can make your MG worse by supplementing with them. Most of what we get is from food and that is often enough.

Again, please have a conversation with your primary doctor about all of this.

Annie
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Old 02-17-2011, 12:50 AM #7
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Quote:
Originally Posted by ucfsurfdave View Post
Wow thanks. So many different ideas. I spoke to someone today at work and said that maybe I should go to an oriental market and talk to one of their herbal specialists about different teas. So diet really plays a big role in MG? My dr never said anything to me about that. I know a lot of water is good for all things in life, but is there a specific reason for MG? Why are peanuts bad? How come Vitamin B is so helpful?

Thanks and sorry for all the questions. Just trying to understand
I want to clarify that I don't think peanuts are bad. From my experiments with food I don't see that they help at all, other nuts, however, such as walnuts and cashews do seem to help especially if I eat a handful of nuts every day.
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