too much talk and no fact

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Re: too much talk and no fact

Postby Sunnee » Fri Oct 28, 2011 4:51 am

cureorbust,


I dont see a Neuro. I just worry new people feel they need to read everything and there is so much inconclusive and incomplete search it must blow their minds, it just seems unfair.


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Re: too much talk and no fact

Postby CureOrBust » Fri Oct 28, 2011 6:13 am

who would you suggests filters (ie limits) the information available?

I have been here at this site a while, and "back then" I could not find enough information. It could go days without a single post! Damned if you do, damned if you dont. The cup for me is half full @-)

I don't "see" a neuro in the typical sense, I see two neuro's depending on what I need. I will see one this week to be prescribed FTY-720 (or whatever they have packaged it as). I do not know which path you have chosen to treat your MS, but I personally like to hedge my bets, and so the mind blowing amount of information kind of suits me, although sometimes I do find its getting out of hand, but I think that's mostly how quickly its gained new comers in the past two years.
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Re: too much talk and no fact

Postby HarryZ » Fri Oct 28, 2011 7:20 am

Sunnee wrote:cureorbust,


I dont see a Neuro. I just worry new people feel they need to read everything and there is so much inconclusive and incomplete search it must blow their minds, it just seems unfair.


Sunnee


Sunnee,

Isn't that what we live in with the world of MS medicine....inconclusive and incomplete?!! MS research has been around since the 1940's and here we are some 70 years later without a cause and certainly no cure. The theories are too numerous to count and the treatments....almost as high....offering what works for some people and does nothing whatsoever for others.

Of course the information field out there is confusing and frustrating to MS patients and it will remain that way until someone can come up with the answers. I'm afraid, however, that is still some time away.

In the meantime, people who visit the various MS sites on the internet have to learn what is good information and what isn't. And that sometimes can be a difficult task.

Harry
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Re: too much talk and no fact

Postby mrbarlow » Sat Oct 29, 2011 7:30 am

Sunnee wrote:cureorbust,


I dont see a Neuro. I just worry new people feel they need to read everything and there is so much inconclusive and incomplete search it must blow their minds, it just seems unfair.


Sunnee



Most of the information I have sourced from here in regard to diet and supplements, I would say on the balance of probabilities is helpful and even if it isnt in terms of MS my general health has improved no end.

I rarely get head aches now, my joints feel a million times better, my digestion is much better, I look healthier, and I don't get the upper back tension I used to suffer from. I put this down to vitamin D, omega 3, and magnesium in particular. Also minimal dairy and wheat in the diet.

Ironically an MS diagnosis has resulted in me feeling healthier than I have for about 5 years!
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Re: too much talk and no fact

Postby Sunnee » Sun Oct 30, 2011 2:41 am

Mr B

I dont mean that sort of benefitial info, but the volume of not really going anywhere stuff, research that hasnt a conclusive answer, so really a waste of time to read it, there seems to be loads and loads posted just lately, a constant stream.

That is what I meant, not relevant things re diet, nutrition etc. now that would be a silly thing to say would it not.

Sorry but praps I didnt explain myself correctly, breakdown in communication eh!

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Re: too much talk and no fact

Postby mrbarlow » Sun Oct 30, 2011 5:35 am

Sunnee wrote:Mr B

I dont mean that sort of benefitial info, but the volume of not really going anywhere stuff, research that hasnt a conclusive answer, so really a waste of time to read it, there seems to be loads and loads posted just lately, a constant stream.

That is what I meant, not relevant things re diet, nutrition etc. now that would be a silly thing to say would it not.

Sorry but praps I didnt explain myself correctly, breakdown in communication eh!

Sunnee


I'm afraid the problem you describe is pretty much an integral part of what a forum is - an open place of discussion. Within certain rules members are free to post their views on treatments from the DMD's to monkey's p1ss simmered at 89.4 degrees C for 36 minutes exactly.
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Re: too much talk and no fact

Postby Sunnee » Sun Oct 30, 2011 6:46 am

Mr. B

I am very well aware of that, but someone diagnosed within days or hours does not, and thats my point, we have all been there, censureship is a dangerous thing, but sometimes control is needed or perhaps a research board for these items to be posted, and therefore people visiting this site for the first time wont feel so overwhelmed by info.

Sunnee

p.s. Please dont suggest I put in a suggestion, I really havent got time at the mo. I dont to post this reply but I like to be clear and understood. I was married to someone who kept getting me wrong, so its a personal thing
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Re: too much talk and no fact

Postby HarryZ » Sun Oct 30, 2011 7:24 am

I am very well aware of that, but someone diagnosed within days or hours does not, and thats my point, we have all been there, censureship is a dangerous thing, but sometimes control is needed or perhaps a research board for these items to be posted, and therefore people visiting this site for the first time wont feel so overwhelmed by info.


I'm not sure how one could ever "control" research news on this or any forum when even the front line researchers don't agree on each others interpretations of what they do.

I don't thing there is any advangate whatsoever in "hiding" certain information from newly diagnosed MS patients. Provide them with all the possibilities and let them, along with their doctor decide what course to follow.

Harry
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Re: too much talk and no fact

Postby civickiller » Sun Oct 30, 2011 7:20 pm

its kinda like tianamen square in china. you search it here in the us, you get massacre, tank man, etc; in china you get gardens, peaceful square not tanks and massacre. so whos lying the us or china? as an example, not saying anything like this is happening here but it can and does happen
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