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#1 | |||
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In Remembrance
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Not always Jack.
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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"Thanks for this!" says: | Mariel (04-18-2014) |
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#2 | ||
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Junior Member
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I used to have attacks in the first few yrs of the disease, but then all attacks just stopped. I haven't had any attacks in 7 long yrs. This is another reason I am freaking out... from what I've been reading is that people who are transitioning to SPMS no longer get attacks as often? Perhaps my new symptoms are a sign of me entering that phase.
All I know is that I REFUSE to take tecfidera anymore. I refuse to ingest all of the below chemicals (which are in tecfidera) and I fail to see how these carcinogenic chemicals could "delay progression". That's crazy! The only thing it will do is increase cancer risk. A lot of these chemicals they have in the drug are not even necessary. Active ingredient: dimethyl fumarate Inactive ingredients: microcrystalline cellulose, silicified microcrystalline cellulose, croscarmellose sodium, talc, silica colloidal silicon dioxide, magnesium stearate, triethyl citrate, methacrylic acid copolymer - Type A, methacrylic acid copolymer dispersion, simethicone (30% emulsion), sodium lauryl sulphate, and polysorbate 80. Capsule Shell: gelatin, titanium dioxide, FD&C blue 1; brilliant blue FCF, yellow iron oxide and black iron oxide. titanium dioxide, - carcinogen!!! magnesium stearate -- carcoinogen!!! http://articles.mercola.com/sites/ar...t-dangers.aspx sodium lauryl sulphate --- carcinogen!! http://articles.mercola.com/sites/ar...l-sulfate.aspx polysorbate 80 --- carcinogen!!!! I'm at the point right now where I can only see myself taking LDN for MS. Hoping that will be enough! ![]() |
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#3 | |||
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Magnate
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Quote:
Edit: I have a large amount of lesions, and my last MRI shows I have 2 active - one's a repeat, one's new. I don't (personally) believe in the DMDs, or other "therapies" for M.S. LDN may be a good option though. I have to echo the "carpshoot" sentiment. I'm 37 and feel like I'm 30 some days, others I feel like I'm 65. I agree with what Erin says, stop Googling. Have good, open communication and discussions with your specialists and doctors. Tell them how you feel. Your worries, fears, ... that you're concerned you'd been stable, and now you're noticing certain symptoms. Hugs <3
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2004 to present - Trigeminal Neuralgia 2007 to present - Burning Mouth Syndrome March 2008 - Multiple Sclerosis DX 05/2008 - Relapse 05/2008 to 02/2009 - Copaxone 10/2011 - Relapse - Optic Neuritis developed 9/2012 - Relapse - Balance issues 1 sided 8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax) April 7/14 - Raynaud's Syndrome DX Last edited by dmplaura; 04-13-2014 at 09:54 PM. Reason: removed links from quote and added additional information to my post |
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#4 | |||
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Elder
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when I was still being diagnosed, I drove myself absolutely insane with all the googling. Even now, I tend to over-google symptoms. Trying to figure out what's going to happen with the MS.
Hopefully I've been able to force myself to stop. It just makes me more and more nervous about what's going on.
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~ Never do anything that you wouldn't want to explain to the paramedics. ~ Author Unknown ~ ~ "Animals have two functions in society. To taste good and to fit well." ~ Greg Proops, actor ~ |
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#5 | ||
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Senior Member
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A couple of decades ago, Dr. Mercola (a naturopath), introduced the general public to natural remedies and preventative health care strategies. With the passing of time, he has become more of a marketing promoter; especially for supplements that he has a vested interest in.
If you did everything and took all the supplements that Dr. Mercola suggests, you would have a full time job just procuring and swallowing all the capsules, teas and other supplemental supports...and would be broke in short order. Eat well, exercise, listen to your body and mind...and live a happy life. With love, Erika |
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#6 | |||
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Wisest Elder Ever
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Quote:
When I was waiting for my diagnosis I googled everything I could find and got just as many diagnosis'. It was maddening! I had eventually self-diagnosed myself with a brain tumor so you can imagine my relief when the doctor said "MS"! He was a little taken aback at my relieved reaction but understood once I explained to him what I thought I had. ![]() Laura gave you some good advice. Talk to your doctor and let him know your feelings. Make sure your doctor is a good fit for you....not all doctors are.
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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#7 | |||
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Member
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Google wasn't around (or at least it was, but not in my home or even in my knowledge-sphere when I got Dx'd in 2001 - I think I had heard of it, but it was a world away from me).
Still, there was lots of media-hype about motor neurone disorder at that time, so when I started slurring my words, going numb, losing my vision, pee-ing myself and tripping all over everything I was terrified and thought 'this is it'. I was only thirty-two and had two small children. My diagnosis ended up being such a relief, although I was convinced, with everything I read and saw (and later Googled - because my computer ignorance didn't last long: I had a physical job back then and had to 'reinvent myself' and do something less demanding) that I was primary progressive. Time told the story and I re-trained, became a teacher (in my industry, teaching business and retail to adults) - I have done this for ten years, and so far - touch wood, I have not progressed too badly. Knowledge IS power, but sometimes, it is debilitating - you just need to be careful that you don't make it a 'self-fulfilling prophecy'. Just my humble thoughts xx
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Lyn . Multiple Sclerosis Dx 2001 Craniotomy to clip brain aneurysm 2004. ITP 1993. |
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#8 | ||
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Junior Member
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Thanks for all the replies. I'm taking LDN for the first time tonight. I'm eager to see what happens.
It is CRAZY what companies will put in your food as well as vitamins/drugs. More often than you realize, they are putting toxic chemicals into your food here in the US. Chemicals that are actually BANNED in other countries!! Please google "foodbabe" and check out her website. This girl "Vani Hari" is my hero, she is fantastic! Subway was, and is probably still is, putting a toxic cancer causing carcinogen called "azodicarbonamide" into their bread!!! The same chemical used to make yoga mats! This girl has been featured on CNN, USA Today, The New York Times, Dr Oz Show, The Washington Times... this is girl taking on huge food companies and corporations (such as Monsanto and their dangerous GMOs) head on!! Check her out. Biogen is no exception, their drugs have certain added chemicals that are NOT of any benefit to the patient. It's always about money money money and more money. The more they can increase their margins the better and screw the people!!!! I am not a fan of big pharmas. It is not surprise why cancer is on the rise. The amount of cancers we are seeing today is just NOT normal. I confess I am super paranoid about getting cancer and don't appreciate these jerks putting more unnecessary added carinogens into my food and drugs!!! I no longer eat any processed foods. |
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"Thanks for this!" says: | Erika (04-14-2014) |
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#9 | |||
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Member
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Yes - not always.... but it appears that if MS is not treated with a DMD that up to 60% of those with R/R MS will progress later in the 2nd stage to lose the ability to walk.
I do not know how much reduction in that 60% will occur if one takes a DMD but I have found some studies may contain that data. jackD
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As God is my witness, I really thought turkeys could fly! (WKRP in Cincinnati) |
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#10 | ||
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Junior Member
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What are your thoughts on LDN?
From what I've researched, LDN and similar to tecfidera is some ways, but is not toxic. Guess time will tell... I'll be getting another MRI in 6 months and if my MRI is still stable then I'll know it's "working". |
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"Thanks for this!" says: | Mariel (04-18-2014) |
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