This Is MS Multiple Sclerosis Knowledge & Support Community

Vesta,
I appreciate you sharing your experience and point of view. Please don't stop.

Ladymac,
I appreciate your sharing as well...but I'm not a fan of censorship. Debate is great and useful. Personal attacks are not.

We are not all newbies. Many of us are looking beyond dmds for management of our ms. Many of us do well without the dmds. Your way is just one of many. Please keep sharing and allowing others to share as well.

Anonymoose (US citizen)

rules of the forum say, where points have been made on both sides and will not sway the other party, just agree to disagree rather than hash out opinions using the same info, ad nauseum.

debate is critical to the evolution of the conversation and the bolstering or redirection of our ideas. NEW information related to a position makes a particularly relevant contribution.

by all means please continue to express yourselves civilly, within the established rules that have been set to guide the tone of discussion at TiMS.

I wish to thank Anonymoose and jimmylegs for their comments. I do apologize for having cast in doubt the work of the MS Society since I know Ladymac finds this offensive.
I believe that if I had known 20 years ago of the CCSVI blood reflux theory I wouldn't need a cane to walk today. Before Professor Zamboni proposed it the idea wasn't even available. Now since it IS on the table I believe it inexcusable to prevent pwMS from knowing about it. People can do what they like with the information but at least let's open the door. Therefore I feel my posting of the Joan B summary was entirely appropriate. I won't reprint this here, but allow me to suggest one read the July 4, 2013 blog post "MS: The Rigidity Disease" on my site MS Cure Enigmas.net. Thanks

pwMS don't all have the money it takes to take BG-12. If they do, great. If anyone is doing well on it, that also is great.

The Food and Drug Administration is not the Venous Angioplasty Administration. There are no drugs associated with the CCSVI syndrome or treatment. There may be foods (ask cheerleader or Jimmylegs). I agree to disagree, and you can count me in the ranks of:

• 1, Americans (we don't all live there).
  2. Those who do not think criticism should be censored.
  3, Those who do think that:
  • a) Just because you call yourselves a Society doesn't mean either that you are one, or that you have my best interests on your agenda,
    b) Neither they or the Food and Drug Administration are infallible, above criticism.
    c) Neither organization is necessarily well qualified to discuss angioplasty procedures.

thank you for offering to answer questions for curious readers, m.

MBLG wrote:I am a 54 year old female with RRMS. I was dx'd in 2000 but had MS for about 6 years before that. I didn't use any meds until the BG12 trial which I started in January of 2008 for me so I have been on the correct dose since the start. It was measured against a higher dose, placebo and copaxone.

Since it received FDA approval today, I can now gladly answer any questions that anyone might have.

1eye wrote:pwMS don't all have the money it takes to take BG-12. If they do, great. If anyone is doing well on it, that also is great.

The Food and Drug Administration is not the Venous Angioplasty Administration. There are no drugs associated with the CCSVI syndrome or treatment. There may be foods (ask cheerleader or Jimmylegs). I agree to disagree, and you can count me in the ranks of:

• 1, Americans (we don't all live there).
  2. Those who do not think criticism should be censored.
  3, Those who do think that:
  • a) Just because you call yourselves a Society doesn't mean either that you are one, or that you have my best interests on your agenda,
    b) Neither they or the Food and Drug Administration are infallible, above criticism.
    c) Neither organization is necessarily well qualified to discuss angioplasty procedures.

My response was to a direct question for someone just starting the drug BG12, with the topic being under the Tecfidera BG12 area of this site. I did not respond regarding anything under the other sections of the site that are specifically for CCSVI.

With regards to the FDA, the Stent that is used in some of the CCSVI procedure is considered a medical device which is regulated by the FDA. Due to some catastrophic situations they put out a release regarding the use of the stent with the CCSVI procedure treatment for MS.

I did not attack anyone or sensor anyone. There was none of that. Please give me the benefit of doubt and go back and read Opie's post and my response. All calm and non confrontational and no mention of any other drug or procedure, I was directly answering regarding the BG12 medication, Tecfidera and gave my recommendation of places to go for information, the National MS Society and the drug companies website.

It was not until I was attacked and criticized stating that it was not the best place to find information (again my opinion) where the National MS Society was stated to be not the best place for information. Again, I was obviously stating my opinion regarding the medication this pwms is on and information.

I don't understand why other treatment diatribes were lobbed against me and the pwms I was kindly answering. Like many many other people on this site have thanked me profusely for the tips on taking this information and the transformation with diet and timing of medication. My point, apparently was not read and responded to with an open mind.

Finally, Dr. Zamboni has his patients, and his wife was one of them, on DMD while doing his works on CCSVI. So it wasn't and either or situation. It was and remains according to his latest papers on the subject as necessary to continue the dmd's.

I kindly pointed out that if other things work for people, great, but why I was accosted for responding to a specific question on a specific treatment course that I am currently on and doing well, I can't imagine why that came out of left field.

I think all those that put themselves into the fray should go back and read from the beginning and see that I made no criticism of anyone's anything with my response to Opie.

My response with Vesta was after I was accosted along with snipets of articles, etc., on a totally different topic than was at hand. I went back and checked after Jimmylegs and I had some PM conversation, and the response I answered to Opie is under Tecfidera and then general Discussions. I am not attacking or causing conflict on the CCSVI topic area. I believe that after talking to many many people on this site that we all need to be aware that being overloaded with extranious information and data as a response to a totally different topic has made people feel frustrated and some have wanted to give up coming on this site.

I am owed apologies all the way around on this one. We can debate, but it needs to be in the forum it belongs in and when comments are made that this one said this or that one is that, parts get left out (Zamboni's wife and patients stay on dmd's even though they are working with CCSVI, Stents are considered a Medical Device that must be approved for the purpose used and the FDA regulates that when there are safety concerns, the National MS Society along with the Canadian MS Society and several countries including Netherlands, Germany, Italy and France have all and are all working on researching the CCSVI through funded research and have posted results on the National MS Society website in addition to other research and clinical trial information that is a great place to start. It includes links to papers that were submitted at ECTRIMS as well as the American Neurological Society Meeting). My response to Opie was a reasonable response.

You go Ladymac! Everyone on this website is trying to support as well as being informative. Also, everyone in a sense experience many many many different "stuff" with ms. I sure have learned and become more aware however I do not want anyone to ever feel alone per say WE ARE ALL IN THIS TOGETHER no matter which course one chooses to treat the disease. Ash3

jimmylegs wrote:rules of the forum say, where points have been made on both sides and will not sway the other party, just agree to disagree rather than hash out opinions using the same info, ad nauseum.

debate is critical to the evolution of the conversation and the bolstering or redirection of our ideas. NEW information related to a position makes a particularly relevant contribution.

by all means please continue to express yourselves civilly, within the established rules that have been set to guide the tone of discussion at TiMS.

Good advice. Let's follow it.