[PMCPMC]

Here's a link to a very interesting article
http://209.85.229.132/search?q=cache...&ct=clnk&gl=uk

[alice md]

Originally Posted by PMCPMC

Here's a link to a very interesting article
http://209.85.229.132/search?q=cache...&ct=clnk&gl=uk

Dear PMCP,

when people "claim" something it should be based on some evidence. reputable sites (even wikepedia), will have a reference list, that shows that what they are stating is based on some evidence at least. you can then go and read the original articles, check their methodology and reach your own conclussion based on their facts.
I did not find any such reference at the bottom of this site.

it appears that other people have found similar sites, and I coppy below an answer given to them, in netwellness.

Question:
I have read that research showed patients given manganese sulphate + vits; B1, B2, B6, B12, A,& E.. have went into remission, is this widely known and does it work for all types of MG? The type I refer to is localised to swallowing which is ok in the morning but very difficult by evening

Answer:
Often we hear that "research showed such and such ..." We all must be careful to make sure we check the facts. That is why we have peer (other experts) reviewed medical journals -- to check the facts and claims. If I hear something new from a colleague, I usually ask them to send me the article reference to my email. That way I can read that article carefully. The claims about vitamin treatment sounded fishy to me, so I looked in the medical literature. I could find no studies in peer reviewed medical journals that showed that manganese sulphate and Vitamin B1, B2, B6, B12 or Vitamin A and E were effective in treating myasthenia gravis. If anyone can find such an article, please send me the reference (Journal title, volume number, pages, date of publication). The great thing about medical journals is that expert doctors in the specific areas review the research to make sure that it is solid. It is important to avoid recommending treatments that lack good evidence. Now mind you, when I looked in areas where people are making money selling products that claim to be MG cures, there were tons of products with many promises and a lot of "research proven" claims. It is important to remember that drugs that are FDA approved must be shown to have at least some effectiveness. Nutraceuticals are not tested with the same rigor. They do not need to be shown effective. If they put in the right disclaimer language (you know -- the small print part) they can make all sorts of claims (the large print part). Bottom line: Buyer beware. Hope this helps.

I don't always agree with what MG experts say, but this time I do, and think quite the same.

alice.

[suev]

I must agree with Alice md.

MG (and other illnesses like it) are ripe for 'claims'. I do believe in Vit b12 and D especially when blood tests show low levels. And I'm all for a multi vit if it makes someone happy. However, the nutritionist 'hodge podge' approach without appropriate research documentation isn't going to enhance anything except the seller's pocketbook in my opinion.

For those who do decide to go down this road, I only hope they share what and how much they are taking with their docs (and even their pharmacist). It has always amazed me that the folks who think supplements sold without a perscription are 'harmless' - also believe they are powerful enough to cure! That's an oxymoron to me.

Sue

[AnnieB3]

It is easy to overdose with a resulting 'cholinergic' crisis often resulting in death.

This is what really ticked me off about the article - it's lack of basic knowledge of MG and drugs. It is not that easy to overdose if you have a good doctor. And a good head on your shoulders. AND truly understand what the drug Mestinon does and why and what you shouldn't do with it.

I believe that there are things that will make MG worse - that are proven to make it worse - like infections, stress, heat, etc. And I also believe, in keeping with the basic scientific view of any situation, that a person's immune system can be made better as well. Lupus can get worse if people are in the sun but doesn't necessarily "go away" if they aren't.

And it is hard to "unring" diseases or conditions like cancer. It's much easier to prevent an illness from coming on. It's hard to reverse that genetic/DNA/RNA damage once it occurs.

However, I agree with Alice on this particular article/website.

Did my MG get worse after my B12 deficiency? Yes. Did it go away after the B12 deficiency was properly treated? No.

And I am taking sensible supplements from reputable companies, including manganese, and my MG is not gone.

Patrick, you always have to be wary of people trying to sell products, as I'm sure you know. We all want to think, if we just do this or that, our MG will get better or go away. Personally, I think activities alternating with rest goes a long way to keeping MG stable. I know there are those whose MG is so bad that they have to be on lots of drugs, so I'm not saying only rest will help!!!

I know you were trying to be helpful, Patrick, and I appreciate that. You are really struggling right now and want to feel better. I hope you and your doctors can find the best balance for you.


Annie

[jana]

Patrick, if it makes you feel any better, a LOT of the MGers I know (myself included) did the exact SAME thing that YOU are doing. We ALL wanted a QUICK fix. We all had to LEARN that there is NO SUCH THING.

Sadly, "quacks" see us coming a mile down the road. Be brave, be strong -- and hold on TIGHTLY to your money!!

(((HUGS)))

[PMCPMC]

more quaks I am afraid.

[alice md]

patrick',

sorry to hear about the hard time you are having and I apologize if I have not been sensitive enough in my post.

it is hard to get adjusted to this illness and the way it affects your life. and it really doesn't happen in one day.

there are not many disease that I know that can cause such chaos, like this illness. it is not that you can't know what you will able to do tom. or a week from now. you don't know many times what you will be able to do an hour later. it's a lot like walking in quick sand, when you don't know if the next step will be stable and lead you forward or you will just sink and have to somehow pull yourself out.

the only totally predicatable thing about this illness is how unpredictable it is. that being said, there are people that eventually respond very well to medications, others have to learn to live with this illness, without such a response. and you do learn with time how to walk in this quick sand, how to recognize the areas in which you are more prone to fall, and you also learn how to pull yourself out, after you did sink into it.

just give it time. don't try to find magic cures, but do try what is sensible. learn from the experience of others, but find what works for you.
and also try to get better evaluation and treatment for your respiratory symptoms. ask to be reffered to a pulmonologist, prefarably one with expertise in neuromuscular diseases.


hope you start to do better soon,

alice