16 year old with MS diagnosis

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Postby OddDuck » Fri Jun 25, 2004 12:00 pm

Well, not to be disagreeable, and simply to express my personal experience for many months of being on the MSWorld board, I didn't even realize, see or feel any indications of sponsorship interference with topics of conversation.

As you all know, I'm a lot like Willy, and I think I might have noticed if there were any suppression of subject matter or topics of discussion. I know me, I would have been out of there faster than you can say "cheese", if I had noticed ANY indication of that. There were a LOT of negatives discussed very loudly at times. I myself posted quite a few (naw...ya think?) and never found what Arron suspects to be true. I will say it's more of a "warm fuzzy" board, but not censored too badly.

The same "type" of people and personalities all just tend to gravitate to areas where they feel most comfortable, so perhaps that fact alone may appear to be censorship, when it's really just a "clique" more than anything else. Just a thought?

But then again, I will admit that nobody gets into the particular type of debates we do here. :wink:

So, I guess I'll just leave it at that. Remember, this is just my alternative viewpoint based on my personal experience, not a complete and total disagreement of Arron's (or anyone else's) opinion or interpretation, because as always, different people can and do experience different things.

Deb
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Postby Arron » Fri Jun 25, 2004 1:38 pm

well said, Deb.

Remember, I am not citing any facts in this particular discussion (Although I believe if you ask LarryLDN, he will likely be able to recite a few threads that were deleted), so that's just our opinion/conjecture/hearsay/etc.

The concept is simple: If we had a giant ad for Coca-Cola up top here, there would be a higher probability that we would be nervous when some pro-Pepsi, anti-Coke discussion started as opposed to how we'd feel about that discussion if we did not have any sponsorship ties at all. This is not to say any censorship would happen, even then, but again, the probability is likely higher. Let's leave it at that, please.

Remember: this is pure opinion. This forum has been edging too much towards "I'm right, you're wrong and these are the 54 reasons why" situation, and I'd like it if we did our best to respect and acknowledge each other's different viewpoints rather than trying to win some sort of imaginary debate. We're all in this fight together.

And by the way, all of this to say: feel free to post links to other MS sites as long as they don't post blatantly fraudulent info or profit from selling something. 8)
Last edited by Arron on Fri Jun 25, 2004 2:12 pm, edited 1 time in total.
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Postby willysnout1 » Fri Jun 25, 2004 1:40 pm

HarryZ wrote:Don't you think calling a mother with a newly MS diagnosed son, "highly irresponsible" is kind of crossing the line a bit?

I told her I think it would be highly irresponsible to yank his medicine and substitute with an untested substance. I didn't call her irresponsible. I'll only do that after she yanks the Rebif. Of course, there might be a good reason to yank it. Maybe the kid's intolerant of the interferons, and can't do Copaxone either. In that case, she'd be doing the right thing. But from her message it didn't sound as if that's what is going on.

And referring to people who are using and finding benefit from LDN as part of the "quackery bandwagon".....I would imagine that several readers find that comment rather insulting...that is, unless they consider the source!

I didn't do that, either. The "quackery bandwagon" is quitting ABCRs and taking LDN because of a fascination with alternative medicine or opposition to the phramaceutical companies. Supplementing an approved therapy with LDN ,or going to it after determining that the ABCRs aren't working for you, is a horse of a different color and I have absolutely no problem with it.
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Postby OddDuck » Fri Jun 25, 2004 1:49 pm

Arron: I see your point, and guess I never realized nor thought of some of that before. And I absolutely agee with and fully support all of your comments. Thanks!

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Postby HarryZ » Fri Jun 25, 2004 7:35 pm

Willy,

willysnout1 wrote:I told her I think it would be highly irresponsible to yank his medicine and substitute with an untested substance. I didn't call her irresponsible. I'll only do that after she yanks the Rebif. Of course, there might be a good reason to yank it. Maybe the kid's intolerant of the interferons, and can't do Copaxone either. In that case, she'd be doing the right thing. But from her message it didn't sound as if that's what is going on


I don't think you can split hairs like that....if you call her actions irresponsible, then you call "her" irresponsible...and I don't believe that is your call or my call or anybody's else's call for that matter. And that's because you, nor I nor anyone knows what the exact circumstances are at this moment. In my opinion, I still think it was a very insensitive thing to say to a new member of this forum.

I didn't do that, either. The "quackery bandwagon" is quitting ABCRs and taking LDN because of a fascination with alternative medicine or opposition to the phramaceutical companies. Supplementing an approved therapy with LDN ,or going to it after determining that the ABCRs aren't working for you, is a horse of a different color and I have absolutely no problem with it.


I am going to respectfully disagree with your line of thinking here. You are assuming that this person has made a decision based on why you think she may be making her decision...that being a "fascination" or "opposition" to an approved medicine. We don't know all the facts of what she is basing her decision.

You are also equating an "approved" therapy to that of being an effective therapy. In the past year or so, Dr. P. Behan, Dr. Munari and Dr. Filippini, all very knowledgeable in the world of MS medicine and along with their colleagues, have come right out and stated that the CRAB drugs are not effective and are a waste of time. Drs. Munari and Filippini were more aggressive and stated that Copaxone was basically useless in the treatment of MS. Drs Prineas and Barnett have provided serious proof that the auto-immune system isn't the main culprit in MS. Heck, about 4 years ago, my wife's neurologist here at the large MS Clinic in London, Canada, told her that the research docs were very disappointed in the ABC drugs at that time because they simply weren't doing for MS patients what they originally thought they would do. He would not prescribe then to her because he stated "they won't do you any good!!"

In view of the above, I think it is wrong to condemn someone for not following the "status quo" for MS treatment when the mentioned MS docs are also saying this treatment isn't good either. These are not "quack" docs and have been working with MS for years.

I will always agree with Arron in stating that one must discuss treatment with their doctor and then after learning as much info as possible, make their decision. But I don't believe any of the readers here have the right to call people or their actions irresponsible without knowing all the facts.

Harry
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Postby Ptwo » Sat Jun 26, 2004 3:24 am

[quote="Arron"]

I will say that the MSworld bulletin board is sponsored by Betaseron, and that makes all of us very uncomfortable that you will truly get unfiltered advice. That's not to indite their board or the NMSS, but common sense says that when your board is funded by Betaseron, you will probably not let people gather and discuss the negatives of that particular treatment too loudly.

I've been a member of msworld for about 30 months and have found the discussion of all treatments, drug or alternative, to be open and honest. There is no feeling that you have to watch what you say because *Big Brother Betaseron* is looking over your shoulder. I would guess that if you polled the membership, most would only be vaguely aware of the Beta add up in the corner.

I've noticed that MGH has added advertising to their header, message boards do what they have to to survive. It doesn't mean that it effects the content of members post's. Just for full disclosure, how does this board finance it's operation? Are you guy's paying out of your pockets?
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Postby Arron » Sat Jun 26, 2004 9:33 am

out of pocket... quite honestly it does not cost THAT much to run a message board. MGH is an exception because they run message boards for practically every serious disease known to man.
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Postby Guest » Sat Jun 26, 2004 11:01 am

Ptwo wrote:I've noticed that MGH has added advertising to their header, message boards do what they have to to survive. It doesn't mean that it effects the content of members post's. Just for full disclosure, how does this board finance it's operation? Are you guy's paying out of your pockets?

MGH finances through donations, and now the advertising. The ads are delivered by either Yahoo or Google, not sure which. There's no drug company "sponsorship" involved. Here is an [color]explanation from the administrator of the MGH site[/color]. I frankly would prefer that MGH did not accept advertising, but I understand the need to pay the bills.
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Postby willysnout1 » Sat Jun 26, 2004 11:03 am

MGH finances itself through donations, and now the advertising. The ads are delivered by either Yahoo or Google, not sure which. There's no drug company "sponsorship" involved. Here is an explanation from the administrator of the MGH site. I frankly would prefer that MGH did not accept advertising, but I understand the need to pay the bills.
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Postby willysnout1 » Sun Jun 27, 2004 1:07 pm

CCMom, if you should happen to read this, please look on the "Introductions" board. I posted a message to you including an apology for having called your decision about your son's treatment an irresponsible one. I hope you will read it.
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Pediatric/Adolescent MS

Postby billmac » Mon Dec 13, 2004 2:16 pm

Kim,

Sorry to hear about your son. However, there is currently quite a bit of interest in MS occuring in children and adolescents. As mentioned in prior (separate posts) there are two groups in North America studying MS in kids. One is in Toronto, the other is the National Pediatric MS Center at Stony Brook. (rumor has it that others will be opening soon) The National Pediatric MS Center is located in Stony Brook New York, which is on Long Island, a short drive outside of Manhattan (not Rockport, as reported). THis center is affiliated with the State University of New York at Stony Brook. They are a non-profit organization and offer free consultation/information etc. www.pediatricmscenter.org

You may also wish to contact the National MS Society and request a copy of the publication "Kids Get MS Too" I think you can download it directly.
http://www.nationalmssociety.com/peds_network.asp Researchers from the Toronto Center, as well as the New York Center contributed chapters

You should also be aware that the Stony Brook Pediatric MS Center has started running yearly camps for kids with MS, under the idea that most of these kids are unlikely to be aware of other kids with this diagnosis. Kids have attended from all over the country. THere are pictures on the website.

good luck!

-bill
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Postby CCmom » Tue Dec 14, 2004 5:39 am

Thank you so much, Bill. I was already familiar with all of those, but I'm sure this information will be of use to many others here, since it seems we have more and more young people with MS all the time.

Interestingly enough, I have contacted the pediatric MS center in NY without a great deal of response, unless I want to bring him there and put him through all the testing he has already been through, which I don't. His tests results were all negative for MS, anyway, and all of them have been repeated several times already. We saw so many doctors - pediatric neuros, neuros, MS specialists, and all of them told us that with my son we just have to treat the symptoms. Whatever he has is under the "MS umbrella", and he was diagnosed on lesion appearance alone.

He is doing amazingly well with LDN, and has been using it since June. We are hopeful that he will continue in this manner.

I really appreciate all of the support and information I receive here. We're all in this together! Take care, and have very happy holidays!

Kim
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Teens with MS

Postby Share » Mon Dec 20, 2004 8:03 pm

Hi,
First let me say I am very sorry .....second I worry all the time my boys may have it.....they get it now from both bloodlines....and to this date no one knows where or how MS travels.
Ok now for the positive...in Toronto Canada there is a MS clicic just for children....I am not sure what hospital it runs out of though but they may have support groups or online stuff.....hope this helps a bit
Share
optimism goes a long way....and rubs off on others
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Postby billmac » Tue Dec 28, 2004 9:16 am

Share,

The center in Toronto is at the Hospital for Sick Children. THe program is run by Brenda Banwell. Hope this helps.

-bill
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