PeopleWithMS.com Newsletter

May 7, 2004


PeopleWithMS Welcomes 

Chat is jumping most every night starting 7PM EST.  In addition, Muff is often in during the day, so stop by and say Hi if you are on-line.  

Lesley Anne joins us as a Chat Host Wednesdays, 11 am - 1 pm EST.  Stop in for a visit and some Canadian-style chat, eh ?

PattiK, dx'd 98 in '98 RRMS and on Avonex, joins us from Wisconsin.

Laura, dx'd in 93, joined us briefly from Michigan.  

Jim007, dx'd in '98 with RRMS, on Rebif, popped in from Glasgow, Scotland.  You may recall him as a long-ago JJ's chatter.

JeffS has been back in chat after a prance down prednisone lane.  Generally doing better, though residual leg spasms are still a problem.

Gailpooh is back from her vacation in Massachusetts.  She had a great time, and tipped us to a wonderful place to visit;  New England's Butterfly Conservatory and Museum - http://www.MagicWings.net

Delbert should be in Wyoming this week, and headed towards Nebraska. WheelsofHope needs your support ! Track his progress across the 48 continental United States; http://www.wheelsofhope.net/  

PeopleWithMS.com needs chat hosts ! ! ! Donate a couple hours during the day or evening to host, on a regular basis, and we'll make you famous !  If your focus is a particular topic or aspect of MS, just let us know and we'll post that in the Newsletter, too.  

Muff continues as our stalwart host for many hours during the day.  Just waiting for your visit.  Whenever you see her in chat, with an afk next to her name, she's probably off making herself some tea.  Just say hi, and she'll pop back.


PeopleWithMS.com Hot News Contest

This Month's Contest Prize

A Hand-Painted Cane from our sponsor, StumblinStyle

Something special for yourself, or someone you know who needs something to brighten every footstep in their day.  We'll be offering the winner their choice of a tasteful selection of men's or women's canes in derby or crookneck handle styles and various weights.

( Absolutely no cost to the winner - we even pay shipping ! )

The first sharp-eyed news maven to report the latest breakthrough news or research to PeopleWithMS wins a prize ! ! !  (click here for details . . .)


New Stories and Pictures

ThisCouldBeYou

?

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

New Link Sightings

Every week we add new link sightings which may be of interest, as reported by our visitors.  This will highlight new links you may want to investigate, before they disappear into the obscurity of some huge link listing.  If you come across any site which you think may be of interest, please e-mail us PWMS@PeopleWithMS.com with the site address and a brief description of what you found interesting on the site.  We'll include it in the next Newsletter.


Four little links.  Chock full of great information.
Drug infomation online:  NOVANTRONE

Drugs.com 

 

PWMS Major Drug Company 5-4-04
This is the direct link to the Novantrone page of this nice general medical reference site.  The page lists a range of interesting articles specific to Novantrone.  However, worth noting is that this is but one of many, many medications similarly profiled.  So generally quite useful to all, whatever the medical concern.
Medline Plus - Multiple Sclerosis

National Library of Medicine & National Institutes of Health

PWMS Government Links 5/5/04
A broad range of topics are covered on this all purpose US Government site.  
National Institute of Neurological Disorders and Stroke

National Institute of Neurological Disorders and Stroke

PWMS Government Links 5/5/04
This is probably the key MS-specific site for US Government information of a general and medical-specific nature.  
Chemotherapy Drugs

Sloan-Kettering Cancer Center

PWMS General Medical Reference Sites 5/5/04
An excellent site for discussion of the wide range of medications used for cancer treatment, including "heavy-guns" medications like Novantrone, Cytoxan, and others in use or contemplated for MS.  

News Sightings

JackIL has the first entry in our contest.  Now where's yours ? HINT:  We've seen a couple of goodies, but we're going to hold back until next week and give everyone else a chance.

Longest Running Multiple Sclerosis Trial Shows Copaxone(R) Effective Over 10 Years PRNewswire/Teva Neuroscience JackIL 5/6/04

13:00 EST

"Relapsing-remitting multiple sclerosis (RRMS) patients who remained on COPAXONE(R) (glatiramer acetate injection) therapy for an average of 10 years experienced significantly less progression of disability than patients who withdrew from the open-label, long-term follow-up study. . . . According to data presented late yesterday at the 56th annual meeting of the American Academy of Neurology, more than 90 percent of the 108 patients still on COPAXONE (R) did not show evidence of disease progression to an EDSS of 6.0 on the Expanded Disability Status Scale (EDSS). In comparison, 50 percent of the 47 patients who withdrew from COPAXONE(R) therapy after an average of 4.5 years progressed to this score."

Now is is a bit of a hype, coming as it does from Teva.  Still, it's the results of a hard study, not fluff, presented at the latest American Academy of Neurology Annual Meeting. So a pretty definitive conclusion.

Low-Dose Interferon beta 1a Ineffective in SPMS PubMed National Library of Medicine PWMS 5/5/04
A "Multicentre, randomised, double blind, placebo controlled, phase III study of weekly, low dose, subcutaneous interferon beta-1a in secondary progressive multiple sclerosis" "Interferon (IFN) beta has repeatedly shown benefit in multiple sclerosis (MS) in reducing the rate of relapse, the disease activity as shown with magnetic resonance imaging and, to some degree, the progression of disability...." " CONCLUSIONS: . . .Treatment with low dose, IFN beta-1a (Rebif(R)) once weekly did not show any benefit in this study for either disability or relapse outcomes, including a subgroup with preceding relapses. These results add a point at one extreme of the dose-response spectrum of IFN beta therapy in MS, indicating that relapses in this phase may need treatment with higher doses than in the initial phases."

Basically, the study found that Rebif used at a half-dose, only once a week, does not statistically slow progression of MS.  Whether this would hold true at the normally prescribed dosage will presumably be the subject of a follow-up study.


New Information

Is your PC acting weird?  Slow?  Booting spontaneously?  

If you are running Windows XP or Windows 2000, you may well be infected with the "Sasser Worm."  This little nasty is slightly different from your typical virus.  It doesn't come in via some junk e-mail;  it comes in the back door through a keyhole in the "Local Security Subsystem.  (Doesn't sound like much of a security system, does it ?)" 

The first thing to do if you suspect this might be happening to you is go to Microsoft's site on this bugger;  "What You Should Know About the Sasser Worm and Its Variants"  There is a tool on the page which will automagically check for infection.  If you can't get it to run, in Windows Explorer you can search for the file "AVSERVE.EXE"  If you find it, you have a problem.  

This is easy to eradicate, if you can patiently get through Microsoft's page.

"Don't try this at home":  If you are comfortable manipulating the Windows Registry, you can simply kill it by going to the following key;  HKEY_LOCAL_MACHINE\SOFTWARE\Microsoft\Windows\CurrentVersion\Run and deleting the value "avserve"  and in Explorer, the aforementioned file.  


New on the Website

DreamChat Trivia (repeated by popular demand)

  • New to Dreamchat and wondering how to make those neat little smileys and pictures in the text? Easy, here's the Cheat Sheet:

:) Smile   :* Kiss
:( Sad >-- Rose
;) Wink <love> Love
;} Wry <strobe> Strobe
:p Tongue <nuke> Nuke
:o Gasp <boom> Boom
:# Mad <star> Star
  • How do I copy and paste something?  Mark it as you usually would with the mouse.  Then use CTRL-C to copy it, and CTRL-v to paste it in the message window.

  • I'm a member.  I uploaded my avatar, and nothing happened.  What's up with that?  Even if your avatar is the specified 50 * 50 pixels, and no bigger than 15KB, there is no confirmation.  Apparently because DreamChat personnel review all permanent member's avatars to make sure they are acceptable.  (Whatever that means.)  If they are, they send back an approval in a day or so, and the next time you sign in, "poof" your new avatar appears.

  • That DreamChat Discussion Board . . . . . is a real nice idea.  However, visitors have discovered, as we did, that you must be a DreamChat Community Member to post.  That's not too nice.  You can visit in chat as often as you like, for free, and there's no reason you should have to pay them to express your opinion.  So we're thinking on workarounds or alternatives.  If you have any suggestions of non-commercial Discussion Boards or Forums, let us know.    

Want to receive our Newsletter each week ?

Visit our site and sign our Guestbook, including your e-mail.  Or send us a request;  PWMS@PeopleWithMS.com

News Letter Archive

Missed something from an old Newsletter?  Find it here !

5-7-04
5-1-04 4-23-04 4-16-04 4-10-04
4-2-04 3-27-04 3-20-04 3-13-04
3-6-04 2-28-04 2-21-04 2-14-04
2-07-04 1-31-04 1-24-04 1-17-04

StumblinStyle.com - Handpainted and Customized Canes

©copyright 2004 PeopleWithMS.com