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ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,460
9/24/14 6:41 P

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www.lifescript.com/health/centers/mu
lt
iple_sclerosis/articles/multiple_sclR>erosis_treatments_that_show_promise.aspx


This another article I found and it list's the pros and the cons...

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


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ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,460
9/19/14 10:38 A

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http://multiplesclerosisnewstoday.com/2014
/09/01/new-multiple-sclerosis-drug-may
-repair-nerve-demyelination/

You will have to paste this link into your browser. I am using my iPad and it won't let me add the link...it's about a new drug being tested that will help with re-myeliating the nerves...check it out!

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


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ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,460
9/8/13 8:10 P

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www.medicalnewstoday.com/releases/26
56
23.php


Found this while surfing the net!

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


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ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,460
8/5/13 9:45 A

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www.medicalnewstoday.com/releases/26
41
79.php


I hope everyone is getting the links to the articles I am posting...this one seems very interesting as it applies to me...I feel like my disease is worsening, but my MRI results are stable...unfortunately I never had a base line LP when I was diagnosed as it wasn't needed...My MRI glowed and could light up the night sky! LOL! Not to mention my SPEP and EPEP were positive...
So here is another article...hope it helps ...

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


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ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,460
7/23/13 12:20 P

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www.everydayhealth.com/multiple-scle
ro
sis/blood-test-could-soon-track-ms-dR>iagnosis-treatment-mri.aspx?xid=nl_E
ve
rydayHealthLivingWithMultipleScl
erosis_20130723


Here is a link that tells us there may be a blood test for MS...it is years away, but would do away with MRI's to monitor progression.

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


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ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,460
7/18/13 10:23 P

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nationalmssociety.org/news/news-deta
il
/index.aspx?nid=8012


My friend found this information today and I thought I would pass it along...its about a patch with Myelin Peptides in it...

Hopefully this will be a turn around...

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


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ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,460
6/12/13 6:09 P

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Hi everyone! I subscribe to a blog and webpaper(I don't what know else to all it) and found some interesting information. As I go from year to year I find there are many factoids about MS (and other pathologies) that I had no clue about and perhaps I should delve into it...So I am posting this link about JC virus...the precursor to PML

http://www.everydayhealth.com/columns/tr
evis-gleason-life-with-multiple-sclero
sis/false-test-results-may-put-ms-pati
ents-at-risk/?xid=nl_EverydayHealthLiv
ingWithMultipleSclerosis_20130611

and another link

www.everydayhealth.com/multiple-scle
ro
sis/should-patients-be-tested-for-jcR>-virus-before-tysabri-is-prescribed.aspx



Please let me know what you think about this information or have any to add...

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


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ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,460
6/8/13 7:28 P

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www.everydayhealth.com/multiple-scle
ro
sis/immune-boosting-therapy-for-multR>iple-sclerosis-may-be-the-holy-grail
-7
953.aspx?xid=nl_EverydayHealthLi
vingWi
thMultipleSclerosis_20130608



Very interesting article about immune therapy

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


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ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,460
6/7/13 9:23 P

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I love my autoinject and I am staying away from medications that are not in use for at least 5 years...I am lucky...I don't have reactions to Copaxone. Occasionally, I get a lump or wheel...otherwise I'm OK...

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


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AWESOMECHELZ's Photo AWESOMECHELZ Posts: 9,687
6/5/13 12:38 P

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Gilenya made me very sick - continuous infections for 9 months and my asthma almost killed me. It was awful. So, I think I will wait, like you, for the BG-12 to be out for a while. I may go back to Betaseron or the weekly one since it has an autojet now.

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ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,460
6/4/13 8:32 P

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I think they are speaking of the "fulmarate" portion of the compound...for BG-12...I spoke to my doctor and he said they have only tested BG-12 for 2 years and I cannot take Gilenya because of my heart and Aubaggio had most of the side effects...so we won't know for a while about BG-12. I'm staying on Copaxone....

Chelsea...Send me an email because by gmail said there was an error with your email address....

If I get any other information I will let everyone know...

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


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AWESOMECHELZ's Photo AWESOMECHELZ Posts: 9,687
6/4/13 10:25 A

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I read that one of the ingredients in BG-12 was in Tysabri which had problems with PML. Of course, BG-12 is different than Tysabri but it still makes me nervous. I had an anaphalactic reaction to Tysabri and I don't want any troubles. I will be seeing my doctor in 1 1/2 weeks and will ask him about it.

Can't wait to see the photos. Send me an email. emoticon Like you, the heat is a killer right now. I was out a lot yesterday and I am paying for it today - no energy, no motivation. emoticon

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ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,460
5/25/13 3:37 P

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Hi Chelsea! Hi Everyone!
I read some more information about BG-12. The new information didn't mention PML...I intend to ask the neurologist this coming week...
London was cooler and at 55 degrees was perfect, not to mention the parks and flowers everywhere...that kept my spirits high...all I wore was jeans, a long sleeve shirt and a fleece. I did wear a hat and had a scarf and gloves....The full day day was beautiful with no rain whatsoever. The heat, upon returning, has slowly taken away my energy...at least today I got to the pool....
Chelsea....lunch sounds great! I will tell Dale and June is good too....I'll talk to her about a date...
I still have to upload pics to Shutterfly...I will send link ASAP! emoticon

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


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AWESOMECHELZ's Photo AWESOMECHELZ Posts: 9,687
5/25/13 1:06 P

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Wow, Zzz!!!!! I am SO very glad you shared this here!! I can't believe it. emoticon emoticon emoticon I had such high hopes.....

I do need to be on some kind of medication so I think I will go back to Betaseron, the only one I could barely stand.....Of course, I need to watch my liver and will start taking the herb milk thistle which worked well for me to protect the liver. Oh, well. I think it is a good idea to wait too for it to be out for a while. Gilenya, which I tested, made me very sick but helps others so I will wait and see. Thanks for letting me know.

AND can't WAIT to see your photos! Send me the link through my regular email and let's talk about getting together in June sometime and am looking forward to meeting your good friend. The heat is a killer, I agree, so maybe we could just go to lunch again and just talk. Maybe that's why you loved London - cooler. emoticon

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ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,460
5/22/13 6:10 P

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www.medpagetoday.com/MeetingCoverage
/E
CTRIMS/35315


Hi Chelsea! Hi everyone! Back from vacation! My days in London were spectacular, but coming home and getting hit by the heat has me back to fatigue...cannot complain as I had a wonderful time and my cousin took me to great places...got to ride on the overground, the underground and the buses...ate in fantastic restaurants...
Dublin was beautiful too....we missed Cork due to rough seas and didn't get off in Falmouth or Le Havre...extreme fatigue...I think I belong in London...LOL! I walked 5 miles each day...wonderful...My pictures are on Facebook and soon I will have them on Shutterfly with a link for everyone to see...it will take a while as there are hundreds...
emoticon

The link is about the medication you mention...I don't think the testing is long enough...two years is a long time for a patient with MS to have to wait for a treatment, but if it is going to cause serious harm I would rather wait longer....they have found some trouble with this medication...read the article and I am going to ask my doctor next week when I see him...

Edited by: ESMERELDA1220 at: 5/22/2013 (18:12)
Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


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AWESOMECHELZ's Photo AWESOMECHELZ Posts: 9,687
5/22/13 11:00 A

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I want to tell you all that I got confused about the medication that I was excited about. It is called Daclizumab and it is still being tested. It will probably be on the market next Spring.

When I lived in Pinellas county, Florida, I was testing it in St. Petersburg but because of memory problems, I got the names mixed up. emoticon Daclizumab is the one that has very minimal side effects. emoticon

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ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,460
5/18/13 5:43 P

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I saw an article (and I should have posted the link) that suggests that one side effect might be PML...waiting to find out more at the end of the month from my neurologist...

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


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RIDELIKEAGIRL1's Photo RIDELIKEAGIRL1 Posts: 23
5/17/13 12:25 P

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April 9 Health Canada approved Tecfidera (BG-12) emoticon
My neuro suggested my switch to that from Betaseron, which I was VERY excited about initially as I have been unhappy with the general quality of life I have experienced for the last 3 years since my switch from Copaxone. My excitement was diminished drastically though when I learned just how expensive this treatment is!
Any Canadians in this group who have more information on this?
Thanks! Kate

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ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,460
3/28/13 9:18 P

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I wouldn't use Novantrone unless I had to...I don't like the use of cancer drugs for other reasons, although I am sure they have been test...it just seems "icky" to me... emoticon
And I know my doctor wouldn't want me to change if all was going well...

I think with the problems you have been having, getting onto a DMD is a very good thing...go for it!



Good Luck, with your move! It will be wonderful! I am so excited for you!!!!

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


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AWESOMECHELZ's Photo AWESOMECHELZ Posts: 9,687
3/28/13 9:03 P

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Zzz, if I was stable on any MS med, I would keep it. The reason why I am so excited about this medication is that I am not taking anything, have tried everything (except Novantrone), and I need to start on something. I would not change if I was you. In the past, when I was doing well on something, no matter what else came up as new, I stayed with what I had.

By the way, how are you, my friend? I am moving in 1 1/2 days and I am SO busy but hopeful. Take care. Love, Chelsea emoticon

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ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,460
3/28/13 8:17 P

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I wonder how much it will cost as compared to the Copaxone and if they will have an assistance program? I am afraid to change over because I am fairly stable and Shared Solutions is a great help...

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


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AWESOMECHELZ's Photo AWESOMECHELZ Posts: 9,687
3/28/13 7:47 P

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BG-12 has been approved by the FDA! I read here in SP and got an email about it as well:

www.sparkpeople.com/resource/health_
ne
ws_detail.asp?health_day=674870


I spoke to my doctor about it on my last visit and we were just waiting for the announcement. I have tried all the MS meds except Novantrone since I have had MS for 28 years so this is exciting for me.

Love, Chelsea emoticon

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HIKETOHEIGHTS's Photo HIKETOHEIGHTS SparkPoints: (116,659)
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10/9/12 4:31 P

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This just in from the M.S. society: Link down below

Published results from two large, phase III clinical trials of BG-12 capsules (dimethyl fumarate, Biogen Idec) in people with relapsing-remitting MS suggest that this experimental therapy significantly reduced relapses and disease activity as detected by MRI. In one trial, BG-12 also reduced disability progression. These results were previously reported at medical meetings, and lead authors Ralf Gold, MD (Ruhr-University Bochum) and Robert J. Fox, MD (Cleveland Clinic) and colleagues have now published complete results in The New England Journal of Medicine (2012; 367: 1087-97 &1098-107). The U.S. Food and Drug Administration is currently reviewing an application for marketing approval for BG-12.


nationalmssociety.org/news/news-deta
il
/index.aspx?nid=6906#


"A reminder to walk comes from one heart to help another." Me
HIKETOHEIGHTS's Photo HIKETOHEIGHTS SparkPoints: (116,659)
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9/20/12 7:37 P

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www.nationalmssociety.org/news/news-
de
tail/index.aspx?nid=6864

Aubagio expands options for people with relapsing MS

The U.S. Food and Drug Administration has approved teriflunomide once-daily pills (Aubagio, Genzyme, a Sanofi company) to treat relapsing forms of MS. This is the second oral disease-modifying therapy approved for the treatment of multiple sclerosis. The therapy is expected to be available for prescription by October 1, 2012 in the U.S.

"A reminder to walk comes from one heart to help another." Me
HIKETOHEIGHTS's Photo HIKETOHEIGHTS SparkPoints: (116,659)
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5/26/12 8:39 P

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Just found this Facebook Page, Please give it a look!
https://www.facebook.com/pages/TurnF
ir
st-Foundation-Helping-People-Newly-DR>iagnosed-with-Multiple-Sclerosis/156
02976948


"A reminder to walk comes from one heart to help another." Me
ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,460
5/12/12 10:18 P

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www.msrc.co.uk/index.cfm/fuseaction/
sh
ow/pageid/1679


From what I read this drug sounds very promising!


Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


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ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,460
5/12/12 10:09 P

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Wow! And when do they publish the statistics for side effects...that is very important...it sounds interesting...very interesting...must look at the research!

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


 current weight: 182.4 
 
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HIKETOHEIGHTS's Photo HIKETOHEIGHTS SparkPoints: (116,659)
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4/26/12 4:10 P

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NEW TREATMENT AWAITING APPROVAL
Biogen Idec Applies to FDA for Approval of BG-12 to Treat MS

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Feb 29, 2012
Biogen Idec announced that the company has submitted a New Drug Application to the U.S. Food and Drug Administration for approval to market oral BG-12 (dimethyl fumarate) for the treatment of MS, based on positive results from several clinical trials involving people with relapsing-remitting MS.

Multiple sclerosis involves immune system attacks against brain and spinal cord tissues. Although its exact mechanism of action is not known, BG-12 is thought to inhibit immune cells and molecules and may be protective against damage to the brain and spinal cord.

BG-12 significantly reduced the proportion of people with MS who experienced relapses in the phase 3 DEFINE study of more than 1200 people with relapsing-remitting MS and significantly reduced the average number of annual MS relapses in the phase 3 CONFIRM trial of more than 1400 people with relapsing-remitting MS. Data from the DEFINE trial were presented at the 2011 joint meeting of the European and Americas Committee for Treatment and Research in MS, and data from both trials will be presented at the Annual Meeting of the American Academy of Neurology in April 2012; abstracts can be viewed on the meeting web site.

If the FDAs review of oral BG-12 finds it to be safe and effective, it would represent an important treatment advance for people with MS, said Aaron Miller, MD, Chief Medical Officer of the National MS Society.

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