PeopleWithMS.com Newsletter

April 4, 2004


PeopleWithMS Welcomes 

Chat is jumping most every night starting 7PM EST.  

Share is joining us as a new mid-day host on Mondays @1:00pm, EST 

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.

Ditz, aka Diane, has given us a story and picture to put beside the name.

MSBUNNY has added a story and pictures to go along with her presence.  

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.  

Delbert is on the road in sunny California, heading towards Oregon! WheelsofHope needs your support ! Track his progress across the 48 continental United States; http://www.wheelsofhope.net/  

New Stories and Pictures

Diane

Hi my name is Diane and I was RX with RR multiple sclerosis in June of 1983. Some people think I might be a little whacky, but I was told over the phone by my neurologist and all I could do was thank him over and over again, as MS was much better then what I was worried my results would be. In my mind I thought I had a brain tumor or ALAS, so I could deal with this diagnosis. I am a fifty year old divorced woman, my choice not his, which I did six years ago. I decided my life though scary on my own with a disease would be much happier then with a person who put me down and made me so insecure about myself I had to look to others to validate I was a good person. (more)

Joan

aka MSBunny

In Jan. 1986 I had my first mini stroke. Feb. saw ENT doctor (donít know his name). Mar. had second mini stroke and saw an intern doctor (still donít know his name either). Went to see my sister, Kim, in Boston and had a seizure. June had third mini stroke. July stopped driving and saw one doctor (still donít know his name either) in Columbus, MD and one MS doctor (still donít know his name either) in Towson, MD and ATH in St. Joseph Hospital. Sept. we decide to see Dr. Johnson, a MS specialist. He said it could be MS but more likely strokes. Oct. stayed at University of Maryland for 3 weeks saw Dr. Price, had a lot test, had another seizure, and because of bad test result had penasine. In August 1987 had symptoms of a seizure and went back to UofM and another test found a hole in my heart. Sept. saw a cardiologist and surgeon at St. Joseph Hospital and had open-heart surgery. In 1993 MS showed its ugly head. Dx with relasing progression. In April 1999 started Beta. August started Detrol LA. Sept. did not sleep for 3 weeks, depress, went to St. Joseph Hospital Mental Section for help. Stopped Beta (made me worse). Dec. got an E/W/C . In August 2001 started Novantrone. In May 2003 stopped Novantrone. (more)

MUFF

Muff aka Terri also donates mucho time to the chat during the day and at night. If you need a link to something, a supportive listener, or just a buddy, she's the lady.  Thank You Muff! 

PS - Whenever Muff is listed in chat with an "AFK" next to her name, it just means she is "Away From Keyboard" but will probably be right back.  So sit down, say Hi, and have a sip of tea......


New Link Sightings

Every week we'll be adding 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.

MS Injectable Medication Side Effects

Rocky Mountain Health Center

PWMS 3/28/04
"There are four FDA-approved injectable medications that have been shown to improve the course of at least some forms of MS. As with most medications, these medications can have side effects, including, in particular, side effects at the site of injection. While managing these side effect is important, very little is known about what techniques work best." 

Do your part to help provide MS-CAM with a baseline of information.  Join (it's free) and take the survey.  Check out the results so far.  Peek at some of the other surveys.  


News Sightings

A couple of interesting bits in the news this week.  Not of immediate use, but nice to file for future reference.

Chemo Could Help Treat Multiple Sclerosis ABC News PWMS 3/27/04
"Doctors at Drexel University reported promising results using huge doses of a potent chemotherapy drug in treating autoimmune diseases including multiple sclerosis, though an MS researcher said more patients and time are needed before any victory is declared."  When all else fails, this may be a promising possibility for those with advanced stages of MS.
Doctors: Chemo Could Help People With MS
The Phillie Burbs / Associated Press PWMS 3/18/04
"Doctors report promising results using huge doses of a potent chemotherapy drug to treat autoimmune diseases including multiple sclerosis, though only a handful of patients have been treated so far and one MS researcher said far more study is needed before any victory is declared." A slightly different version of the above news.
Cladribine Targeted to Become First Oral Therapy for Multiple Sclerosis GENEVA & MIAMI PWMS 3/23/04
"Serono and IVAX Corporation announced today positive results from two clinical trials with a new proprietary oral formulation of cladribine, a potential new treatment for multiple sclerosis (MS).". . . ."Previous Phase II and Phase III clinical trials have demonstrated the positive effect of injectable cladribine in patients with MS. In these trials, cladribine caused a dramatic reduction in new lesion development in the brain as seen on magnetic resonance imaging (MRI) scans." . . . . "This is a major step in the development of the first oral disease modifying treatment for multiple sclerosis."
Goat Serum Update Daval International PWMS 3/31/04
The company promoting goat serum has placed some more information on their website.  The links and pages of new article reprints look pretty tacky, but then their business is making medicine, not web pages.  An article on goat serum will be eventually be available on the MS Pathways site. 

New Information

Tips and Tricks

The simpler things - overlooked and under-appreciated time and labor savers. 

Zip-Lock Tricks 

Suggest your own special uses for Zip-Lock bags ! ! !


New on the Website

DreamChat Trivia

If anyone wants to share there story and picture please send it.

Those helpful Search bars that seem to magically install themselves into Internet Explorer often bear more than you expect.  Not the least being Pop-Up Stoppers.  If some "helpful" new tool spontaneously appears, and you then discover that you can no longer enter your favorite chat or game site, this is the first thing to examine.

News Letter Archive

Missed something from an old Newsletter?  Find it here !

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

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