PeopleWithMS.com Newsletter

April 10, 2004


PeopleWithMS Welcomes 

Chat is jumping most every night starting 7PM EST.  Promptly ! ! !  

Remember:  This is an open chat.  We welcome all who wish to visit and talk about MS.  Respect their opinions, even if you do not agree, as you wish them to respect yours.

Jeff popped in on Saturday night from Rome, NY.  He has had RRMS since '85.  He's in relapse right now, on IV, so don't be surprised if you see him zipping through. He's on Betaseron, and switching to Antegren in the Summer when FDA approved.

Gumdrops has gotten up out of her wheelchair and taken a stroll into our chat.  Not through some miracle cure, but long, hard work.  Lots of rehab and therapy.  We've added a Stories and Pictures page for her.

Ducky returned to chat this week.  Welcome back ! ! !

GailpoohMN, dx '87, has also rejoined our chat after a while away.  She's on Avonex and Baclofen.  Working 25 hrs a week as an Optician.  It's hard, but she's keeping a positive attitude.

PetsRUS6 joined us for an informative visit, updating us all on her progress in the CAMPATH trial currently under way.  She is doing well and has high hopes that it will bypass the FDA and be available by New Years.  We can't wait for her next visit with more details!

Helen popped in from the UK to share with us, and we've put up her Story and Picture.

Delbert has been on the road in Oregon this week, and headed towards Washington. WheelsofHope still 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.  

Share is joining us as a new mid-day host on Mondays @1:00pm, EST and popping in at various other times as her schedule permits.

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.


New Stories and Pictures

Helen

I firstly began with problems when I was 14, but they were to do with my back, so now there is total denial that I have ms in my back. I was diagnosed in around September 1999, I had a provisional diagnosis in February 1999 and all the tests were done in October 1998 when I was taken into hospital for a week. Previously to that my back had felt as though it had gone numb, I had lost all temperature on my left hand side, my left leg kept feeling as though I was going to have some sort of fit. My husband called out a doctor one night and he diagnosed me with a trapped nerve in my foot. Gave me some sleeping pills to allow me to get some sleep and then told me to go and see my own GP the following day. My own GP contacted a Neurologist and I had an appointment and was in hospital all within 10 days. All the tests were completed within the week that I was in hospital then a diagnosis given within a year from that after I suffered a bad form of Optic Neuritis. (more)

Gumdrops aka Candy

Gumdrops is out of her wheelchair, after lots of hard work.  She was told;   "THAT ANY TIME I COULD GO BACK INTO A WHEELCHAIR, SO ENJOY IT AND TAKE ONE DAY AT A TIME."  She's now  back to teaching Kindergarten.  On top of her own 7 kids, ages;  26, 24,24, 21,13,8, and 1-1/2 plus 5 grandchildren. 

She's promised us a story, but for now, her picture.  (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.

Wheelchair.net

Wheelchair.net

Muff 4/2/04
This is really quite a knockout of a site for anyone interested in wheelchairs, scooters, and the many issues related to them.  Absolutely recommended ! 

MS Treatments in Development

Veritas Medicine

PWMS 4/3/04
An extremely readable discussion of the different treatments for multiple sclerosis currently under development.   

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

One really notable item of interest to Copaxone users.

Lipoatrophy in Patients with Multiple Sclerosis on Glatiramer Acetate Canadian Journal of Neurological Sciences PWMS 4/4/04
"Patients with relapsing remitting multiple sclerosis on the disease modifying therapy of glatiramer acetate may be experiencing an adverse reaction of lipoatrophy at the sites of their subcutaneous injections." . . . "Results: Seventy-six patients had been or were current users of glatiramer acetate. Of these, 34 (45%) had evidence of lipoatrophy in at least one injection site area."  What does this mean to a Copaxone user?  Skin subjected to excessive injection frequency risks permanent damage.  Indentations are a sign.  You'll probably need to register on this site for access to the full article, but it's worth the effort.

New Information

Tips and Tricks

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

  • Carry around a little pocket recorder to remember those little things.  Deb
  • Post-Its are great around-the-house memory aids.  Deb
  • Can't type?  Get a copy of Dragon Naturally Speaking or similar voice recognition software.  Deb
  • Can't open the pill bottles?  The Pharmacy will place them in Zip-Lock bags with the prescription stuck on the bag, for easy access. Deb

Funny Stories in Chat

A funny thing happened to Becky's mom.....

There was a bomb scare today at Castle Point Shopping Centre in Sainsburyís. Everyone had to evacuate and also half of the other shops along the mall had to evacuate as well. They had loads of police, fire engines and the Bomb Squad from Southampton also came up. In the end, we found out that the suspected bomb was my mumís shopping bag trolley that she had parked at the front of the store and left unattended whilst her and my dad went for something to eat. So the police blew it up !!!!!!!!!!!!!!! The duty manager came to see us all later on in the afternoon and he wanted my mumís name and phone number and said that the police will be contacting her and she will have to go down the station to identify her shopping bag !!!!!!

New on the Website

DreamChat Trivia

  • How do you do those neat little smileys and pictures in the text? Easy, here's a 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.

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 !

4-10-04
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

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