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 PeopleWithMS.com Newsletter


February 24, 2007

News
Chat Schedule Stories and Pictures
MS DownUnder ChatStar
MSGroup4You Birthdays
MS Canada Famous People
Healthy Eating Poems
Recipes Rod's Music Shoppe

 Preface . . . 

"WE GO TO THESE ROOMS TO HELP THOSE THAT NEED IT AND TO FORGET OUR OWN TROUBLES.  IT IS NOT A REFERENDUM FOR POLITICAL, RELIGIOUS, OR MEDICAL DEBATE. HAVE AN OPEN MIND...WHAT WORKS FOR YOU MAY NOT FOR ANOTHER." ©copyright 2004 JLS (JEFFS)

PWMS chat ! - Update:

The busier we get in chat, the faster the chat moves. Please take a breath, sit back, and give others a chance to be heard. We  are happy to see chat being used so much. With this said, we all need to be considerate of each other. Don't overwhelm the Newbies with too much information.  Just ask if there is anything in particular they would like to know about.  Focus on what they want to know about, and related issues.

We want to welcome Kanga and Wayne as new Room Administrators.  They will be hosting chats at times befitting their topsy-turvy world.  So Australian mid-day chats will probably follow directly from North American evening chats.  And Australian evening chats likely are at an hour few up north are ever awake.


Chat Etiquette Reminder

Please make a point to welcome any new chatter that comes in our room. Introduce yourself.  Ask if there is anything special they want to ask about, know about.  Don't ignore the new chatter.  Offer them coffee and a muffin.  Make them feel at home.  Don't keep chattering about peripheral MS stuff with others, or off-topic stuff.

Just keep in mind the one rule we have:  nobody gets to play Doctor in chat.  What we mean by that is;  don't go diagnosing chatters ailments or recommending medications.  Share your experiences, and what any of the drugs have done for you.  Don't encourage the idea that any medication is a miracle cure. Or dismiss any, or all, medicines as doing nothing.   Even the well known medications have a wide range of effectiveness.  The effectiveness of non-traditional and alternative medicines is even less certain.  So talk about your experiences, factual studies and medical trials.  Offer your opinions with care, and never recommend.  Third hand medical testimonials from a friend of your auto mechanic's wife aren't welcome, unless they are really funny.

Also keep in mind that Laws and Health Care options also vary widely both within countries and across the globe.  So be sensitive to the personal situations and tribulations chatters face.  Don't rub in how great things are for you. 


Stories and Pictures

Kim

I was diagnosed with MS when I was 24 . Yes it was a huge blow but I dealt with it. Life goes on. I had no choice. I had a baby girl that needed me and I could not and would not let her down. My family doc is the one who dx'd me. I went through two neuros before finding the best one I could ever have met. She has since moved to Cape Cod. My Luck. I have been waiting for 11 months now to get back into this new neuro. Relapses come and go I am tough. I live by the grace of God and for the love of my daughter. I have been on many therapies. First Copaxone, which caused me muscle atrophy. I tried Avonex, and last I was on Rebif. (more)
   
   
This Could Be You !

This could be you

Your name, story, and photo in the spotlight, right here in our newsletter.  Just send it along to: PWMS@PeopleWithMS.com

People like to read other stories about MS and dealing with the everyday life with MS. Everyone's M.S. is different and everyone's story is different. Get to know the chatters we chat with. 

Stories and Picture's 

 
We need pictures and stories of our new chatters. It helps new MSer's to see that they can do it also. It helps to know your not alone. So please help others - we need your pictures and stories. They can be emailed to PWMS@peoplewithms.com . Or, anyone who wants to add Pictures or update their story, please do so.

.

 

This Week's Chat Star

Kathie

 

 

Hi, My name is Kathie. I live in Maine, USA. I was DX with RRms in July of 2006. I am married with two grown adult children. I'm 46 years old.

When I was working, I was a med nurse in a locked down Alzheimer's/dementia unit for 7 years, to veterans. I loved my job and had to give it up in September 2006.

Prior to MS slowing me down I used to mountain climb and hike, bike, canoe, snowshoe. I still love the outdoors very much, but am limited as to what I can do now. I love photography, reading, music, genealogy, and people in general. If I can help someone somehow and make a difference, that makes me happy.  (more)

 

 


     
 

NEW BIRTHDAY PAGE 

 CLICK HERE CLICK HERE   

Upcoming Birthday:  

PeopleWithMS - Birthdays, Anniversaries, Etc.

Who will be next ?
Jeff & Tammi Anniversary Feb 24
JACK March 7Th
CINDY March 19th

 

 * * * We need someone to keep track of our chatters Birthday's.  * * * 

If anyone wants to host a chat Birthday Party, we provide the room, we clean up! We will send out invitations. We all have birthdays, some have Anniversary's.  Help make a friend feel very important. We are all important in chat! Throw a surprise party for a chat buddy. Thank your best friend for being there for you! He or she deserves a party!

Book a room and tables for your ' Surprise ' Birthday party while there's still time by e-mailing
PWMS@peoplewithms.com

 
     

FAMOUS PEOPLE WITH MS PAGE   

We're making up a new Famous People Page and we need your input . . . .

So far, we have some semi-famous people.  Not really a lot, and not really terrifically famous.  Kind of a sad excuse for a list.  You're sure to know the name of one or more people that are way more famous.  Send us the name of any well known person with MS, and perhaps a one liner about them (like 'World Renowned Chia Rancher ' )  PWMS@PeopleWithMS.com

 CLICK HEREFAMOUS  


Click Here 

to enterClick Here to go to Chat

our new chat

Click Here

Click Here to go to Discussion Boardto enter 

our new chat



Chat Coordinator!

Norma is coordinating all chats please contact her for any changes. All you have to do is look below and find a place that fits  when hosting is good for you. Just let her know what you choose! 


Chat Hosting Schedule 

Please feel free to give us some ideas for chat. Hey, you can even take charge!  Do your own weekly, or whenever, chat. Just invite your friends in, have a party.  We have many rooms, so you can have your chat in your own room.  

The schedule below shows the schedule of a group of regular chatters who are volunteering a couple of hours of their time to host chat on a regular basis.  This makes a chat more successful; people knowing there is someone available to provide support at dependable, specific times.  

Chat Schedule - February 12, 2007
Day Chat Host London
LST
Eastern
EST
Central
CST
Mountain
MST
Pacific
PST
Monday RonB & Norma   4 -6 pm    11 am - 1 pm  10  - NOON    9 - 11 am    8 - 10 am
Monday Marlene & JackIL
1 - 3 am  8 - 10 pm   7 -9 pm  6 -8 pm 5 - 7 pm
             
Tuesday Norma & Blak   4 -6 pm    11 am - 1 pm  10  - NOON    9 - 11 am    8 - 10 am
Tuesday Cindy & Vanessa  6 -8 pm    1  - 3 pm  NOON - 2 pm    11 am - 1 pm   10 am - NOON
Tuesday Deb & MrRED 1 - 3 am  8 - 10 pm   7 -9 pm  6 -8 pm 5 - 7 pm
             
Wednesday Marlene (aka LadyCove) & Nancy  4 -6 pm    11 am - 1 pm  10  - NOON    9 - 11 am    8 - 10 am
Wednesday Deb & MrRED 1 - 3 am  8 - 10 pm   7 -9 pm  6 -8 pm 5 - 7 pm
             
Thursday Lisa & Norma  4 -6 pm    11 am - 1 pm  10  - NOON    9 - 11 am    8 - 10 am
Thursday Deb & MrRED 1 - 3 am  8 - 10 pm   7 -9 pm  6 -8 pm 5 - 7 pm
             
Friday RonB & Norma  4 -6 pm    11 am - 1 pm  10  - NOON    9 - 11 am    8 - 10 am
Friday PhilNE & Kathie  6 -8 pm    1  - 3 pm  NOON - 2 pm    11 am - 1 pm   10 am - NOON
Friday Norma & Rod 1 - 3 am  8 - 10 pm   7 -9 pm  6 -8 pm 5 - 7 pm
             
Saturday Deb & MrRED 1 - 3 am  8 - 10 pm   7 -9 pm  6 -8 pm 5 - 7 pm
Sunday Deb & MrRED 1 - 3 am  8 - 10 pm   7 -9 pm  6 -8 pm 5 - 7 pm

Note to New Visitors:  

When a scheduled host is logged in, say Hi and hang around a couple of minutes if the room isn't busy -> they're probably just grabbing a cup of coffee or reading e-mail in another window.  

When nobody is scheduled to host, take a look on the right side for any other names.  If so, say ' Hi' and type their name just as you see it => that'll 'beep ' on their speakers.  

Check the 'Connections' Room to see if anyone has stopped by, left a message, and is coming back soon.

Contact us at PWMS@PeopleWithMS.com if you;d like to host on a regular basis. 


.

PWMS & MSGROUP4YOU working together :)

MSgroup4You
Marlene has opened a new MSN group! She is supporting our chat by having all members use our chat room. Please support her MSN group. You can have your own mailbox and have some real fun. They have a message board, and more. Check it out, please. Oh, and of course, FANCY NANCY is helping her set things up in that very special FANCY Nancy way.

Please sign up today !


PWMS Welcomes MSer's from all over

MS DownUnder

MS Downunder

Wayno has returned from his exotic cruise in the South Pacific this week.  He ought to have some great sea and sand stories to share over the next few nights.  And perhaps a few pictures.

Mentioning Stuff

This upcoming week will see the latest online edition of Kanga's Australian Newsletter, Mentioning Stuff. Thank you so much for your hard work. It's a great Newsletter Kanga! You will all be seeing Kanga more in chat. You can read it here http://PeopleWithMS.com/OZ/

This is the week we've started on the OzLinks page.  If you have any favorite links to resources, now's the time to mention it. . . Post us at PWMS@PeopleWithMS.com 
Wayno and Kanga are going to start organizing and advertising some Down-Under chats fitting the topsy-turvy times.  Their Mid-Day chats are going to pretty much continue right along towards the end of our evening chats.  So hang around chat a bit on those nights to help Kanga and Wayno welcome newcomers.

MS Canada

We have no contacts with anyone in Canada for information on an existing weekly or monthly MS newsletter.  Please help us out if you have any leads to information on a Newsletter and how to get it. If there isn't one, maybe you could lend a hand on starting one.  Or by adding some information to help us build up the Canadian portion of the web site. 

PeopleWithMS - Canada

COME ON CANADA - HELP US OUT HERE!


Rod's

Music

Shoppe

Some of you have met Rod, one of our Florida chatters. He has been also been known as our DJ ! He has a very large collection of music. Rod has offered to do his best to find any song you're looking for, and email it to you. He needs the obvious: Name of singer ! Name of song ! He's not a mind reader LOL !   You can email him your requests at:  LINGRAM1@TAMPABAY.RR.COM 

MS BRACELETS OF HOPE

One of our chatters is making MS Bracelets of Hope.  She is selling them and donating part of the proceeds to the MS Society.  I have to say, they are the very best I have ever seen.  Excellent quality sterling silver with Swarovski crystals.  The Women's one is shown to the left.  The Men's one is sterling silver with wooden beads.  She has started a web site http://www.freewebs.com/msthings/   If her web site is down you can email her at leachl@limestone.on.ca 


Poems

Inspirational pages called thePoetry Pages Click Here to go to Discussion Board

Kim has added a nice inspirational piece to her Stories & Pictures page

Please Email us with any poems you would like to share with us PWMS@peoplewithms.com 

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Our Wednesday evening > Healthy Eating support group has started out so well  that we added 3 pages to our web site, and more to the pages. You can find a print out journal, recipes, and check out the exercise page. 

click here

 We will meet every Wednesday evening - check below for your local time 

EST CST MST PST
8PM-9PM 7PM-8PM 6PM-7PM 5PM-6PM

 


Recipes    

Click here

for Recipes

 

Check out all of the recipes on our web site that chatters have shared with us  
Click here for 

Healthy Eating 

Recipes

 

Please Email us with any recipes you would like to share with us PWMS@peoplewithms.com 


OUR MISSION

Our objective is to provide an informal, supportive site for people seeking on-line information about  Multiple Sclerosis.  We aren't doctors, we aren't experts.  We just live it everyday.  We formed this site to share what we have learned, provide a focal point for exchange of information,  and give back to the community. 

Support is a very big word when it comes to MS.  Doctors can only tell you so much during an office visit.  Leaving unanswered questions, concerns and issues.  People with any disease can often learn best from each other.  To this end we provide a chat forum to share information and suggestions, posting of the latest news, and links to authoritative sources of information. 

There are many informative sites out there.  Visit them all!  You can never have enough information.  We do not intend to compete with any other sites.  Like coffee shops, each has it's own unique atmosphere and clientele.  There can never be enough of them.  

Our chat is open for anything that has to do with MS. Some topics are not pleasant. But need to be talked about. If you have a problem, no matter what it is, chances are there is someone in chat that can help you. The one thing that PWMS will not accept is being laughed at for any MS problem. We expect all chatters to be considerate of others. 

We have appointed Norma, Marlene, JeffS and JackIL room administrators. They have been using the chat. They walked through the set up with us. They can help you if you need help. 


News

What is Multiple Sclerosis?

Multiple Sclerosis (MS) is believed to be an autoimmune disease which primarily causes central nervous system problems. In MS, the insulating fatty material surrounding the nerve fibers, also known as myelin, which functions to speed signalling from one end of the nerve cell to another is attacked by cells of the immune system causing problems in signal transduction.

Multiple Sclerosis is the most common of demyelization disorders, having a prevalence of approximately 1 per 1000 persons in most of the United States and Europe . A conservative estimate suggests 300,000 people in the US are affected with a global population of 3.0 million. Interestingly, cases of Multiple Sclerosis in the third world are uncommon.

Onset may occur at any age, but predominates in ages 20 to 40 years. An appearance of MS in childhood or after age 50 is relatively rare. Women are more often affected than men with an estimated ratio of 2 to 1 (DeGirolami et al., 1994). There is a silent, asymptomatic form of MS which is estimated to vary from 5% to 20% of all cases (Netter, 1986) and may be responsible for many cases going unreported.

The etiological agent for Multiple Sclerosis has not been identified but it is known that there are several contributing factors. Transmissible agents have been proposed in the pathogenesis of the disorder (HSV-6, EBV and retroviruses) but all attempts to identify a well-characterized virus has been unsuccessful. Some data suggests an environmental agent in the pathogenesis of this disease. Genetic influences are also clearly evident. The risk of developing MS is 15-fold higher when the disease is present in a first degree relative. One study in Israel indicated that persons immigrating there before their fifteenth year had the same liability for the disease as native Israelis, but those immigrating after fifteen years of age had the same propensity for the disease as people in their country of origin (Sheldon, 1992).

 

This just popped up over on Accelerated Cure's MSNews page . . .

New and improved Copaxone?

Here is a story I ( Christopher ) ran into recently (strange that it wasn't more newsworthy), about a company improving on Copaxone. Supposedly it will work more efficiently and only be needed to be injected subcutaneously only once a week--eliminating the other six injections (yea!). Abstract from ECTRIMS 2006 below...

    Immunomodulation of experimental autoimmune encephalomyelitis by the novel copolymer PI-2301

    B. Carrillo-Rivas, J.T. Kovalchin, J. Krieger, M. Augustyniak, I. Dufour, K. Johnson, H.M. Genova, K. Rafuse, A. Ward, S. Baldwin, R. Kolbeck, J-C. Gutierrez-Ramos, E. Zanelli (Cambridge, USA)

    Years of clinical experience have shown that daily subcutaneous administration of the peptide copolymer Copaxone™ (Cop-1), a mixture of millions of peptides composed of the four amino acids YEAK in random order, is a safe and efficacious treatment for relapsing-remitting multiple sclerosis (RR-MS).

    Cop-1 was modeled to mimic myelin basic protein (MBP) and turned out to ameliorate experimental autoimmune encephalomyelitis (EAE) in mice, most likely by shifting the immune response away from an effector TH1 to an immunoregulatory TH2/TH3 immune response through presentation by MHC class II molecules.

    Recently, a series of new peptide copolymers have been synthesized with the goal to improve the in vivo efficacy of Cop-1. In the present study, we show that Copolymer PI-2301 produced by substituting E with F has improved beneficial effects in a relapsing-remitting murine model of EAE.

    Unlike Cop-1, PI-2301 shows long-term therapeutic efficacy when administered either daily or weekly at disease onset. In an adoptive EAE setting, efficacy of PI-2301 administered daily at the time of autoreactive lymph node cell transfer correlates with decreased serum level of Metalloproteinase-9 and increased level of Metalloproteinase Inhibitor-1.

    Antibody production against PI-2301 and T-cell recall proliferation assay using splenocytes from PI-2301-treated mice underscore the induction of a TH2/TH3 immunity. Evidences of the expansion of T-cells with regulatory properties expressing Forkhead box protein P3 (FoxP3) and producing Interleukin-10 following PI-2301 treatment are also apparent.

    We propose that PI-2301 is a potential novel immunomodulatory compound for the treatment of RR-MS. Clinical trials will soon be started to test this hypothesis.

Also, here's a link to the company developing the drug. Interestingly though, it isn't Teva pharmaceuticals.

 

Booklet on Complementary and Alternative Medicine Available


The Multiple Sclerosis Association of America (MSAA) has produced a monograph titled, Thinking about Complementary and Alternative Medicine? The monograph provides an introduction for people with multiple sclerosis (MS) on how to find and evaluate claims about complementary and alternative medicine (CAM). This is the first of two monographs MSAA is publishing through a grant from Berlex. You can get a PDF version here or see an HTML version here.
 

Montel Williams is promoting the new prescription program 

" Partnership for Prescription Assistance " :  

https://www.pparx.org/

call 1-888-477-2669  /  1-888-4PPA-NOW

There are over 150 different programs that can help you get your meds for free, or at a low cost.  Check it out ! ! !

We also have some links up on our web site that may help. Check it outPatient Assistance Programs


 If anyone has anything they think ought to be added to the weekly news letter, please email me at deb@durgin.net.

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 PeopleWithMS.com Newsletter


February 24, 2007