PeopleWithMS.com Newsletter

June 11, 2004


PeopleWithMS Welcomes . . . . . 

Guest Hosts Susan and JackIL.  They sat in on Friday night, while REDnDEB finally took a night off to go to an MS seminar at Foxwoods Resort.  A Special Thanks from PWMS ! ! !

The Bride and Blushing Groom 

Tuesday, June 1, 2004 was a momentous occasion for the PeopleWithMS Chat, as it was the site of our first chat Wedding. The tumultuous chatroom courtship we've all been following led to proposal by " Blushing Groom" PaulG3PCT to our own Lesley Anne. And attempt to elope and avoid the publicity was deftly turned aside, as JeffS, quick to seize the reins, donned the minister's collar, cap, and gown to facilitate and officiate the solemn occasion. Laura graciously stepped forward as Matron of Honor, and unsuspecting recipient of the ceremonial flowers. SteveNL arrived in the nick of time to offer a good cabin for a scenic Honeymoon Cruise to the Netherlands. Smooth and creamy Calves and Peanut Butter were discussed as possible a Honeymoon treat.

Also in attendance for at least portions of this whirlwind storybook romance were Blairman and Marsha (soon to be announcement headliners in our Newsletter), James (whose parting words were; "Keep smiling and enjoy sex"), whose parting words were; "Keep smiling and enjoy sex"), GrannyBJ (who announced the elopement and shortly thereafter left "with a headache"), and PattiK as our token "Wiscon-sinner"and cheese expert.

Acrimony swiftly developed.  Lesley Anne declared that she would move to England on a cold day in hell. Laura quickly took the opening to flash her nicks and unabashedly flirt with Paul, driving Lesley Anne into further rage. Sensing financial opportunity, JeffS donned grey pinstripe to offer his legal services, for a modest additional 30%. Seeking a discount divorce, Lesley Anne professed her fondness for JeffS.  Although unwilling to cheat, she deigned to consider viewing his credit cards.

Lesley Anne, following up on this, went on a weekend retreat to Bar Harbor, Maine.

GrannyBJ, meanwhile, is off to Alaska for a 7 day cruise along the coast.  Hopefully with pictures upon her return.  

Rod, RRMS, from Florida, and a friend of Judy, stopped by.

Frostbite aka Jackie, from Winnipeg, Manitoba, Canada was Dx'd in '99 RRMS, on Betaseron.

Annie aka AirportAnnie was able to stop in briefly a couple of times.  She's a long ago chatter, now in Germany, studying for an advance degree and still working in medical instruction with the Airlines.

Delbert is in Minnesota all this week.  Remember, WheelsofHope needs your support ! Track his progress across the 48 continental United States; http://www.wheelsofhope.net/  

Chats are most active every night starting around 7PM EST, and during the days around lunchtime EST.  However, feel free to drop by anytime, leave your window open for a bit, and somebody is sure to drop by.

Special Notes:

Daytime Hosted Chat Schedule

Monday 12 - 2 pm Gemlady  
Tuesday 2-4 pm  Dreamcicle
Wednesday 11-1 EST Lesley Anne
Thursday 12 - 2 pm Gemlady  
Friday 12-2 pm Dreamcicle

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 !  Or any other time you'd like !   If your focus is a particular topic or aspect of MS, just let us know and we'll post that in the Newsletter, too.  

You can informally host anytime you want.  Just be there for someone new when they pop in.  


New Stories and Pictures

CarolPA

 

I have R/R Multiple Sclerosis. I was dx in 1991. I have been taking Betaseron shots since 1997. My caretaker is my husband of nearly 39 years. I have two "children".  A daughter who is a police officer and a son who works for Wal-Mart. My son is a single parent, living with us with his 6 year old son, who is apple of our eye. (more)

Betty Jo
aka GrannyBJ

Hello everyone! My name is Betty or you can call me Betty Jo or Jo or BJ. I might even answer to HEY YOU! just to get my attention. I just wanted to tell a little bit about myself. I am married and have been for 33 years. My husband and I are high school sweethearts. I meet him at the first dance of my freshman year. Sam was a junior. We attended Catholic schools. He went to an all boy school and I went to an all girl school. (more )
James

This is about me and all my fun in life. I graduated from Architecture in 1983 and from Ottawa (Algonquin College), moved on to Kingston for Civil Engineering (St. Lawrence College). While at school in Kingston, I met a wonderful girl that is now my wife (18 Yrs this month). We loved life and freedom and both worked and traveled together every year. In 1994 we had twin boys, premature, but they are now 10 and healthy. They were 12 weeks early, 2-12 and 3-6. I have been Diabetic since 1970 and in 2001, I began having eye trouble. The Doctors determined that it wasn't diabetic related, but it wasn't until my legs got really weak, (I couldn't climb the stairs), I was admitted to a hospital in Ottawa (Canada) and they figured it out. Steroids put me back on my feet, but "Optic Neuritis" struck me and never left.

I now have a "seeing eye dog" and we rarely stay home. I have enclosed a picture of me and Jack. I don' have one of us and the family. My wife and I have been together for 18 yrs and we have twin 10 yr old boys. We also have a cat, but she doesn't count. (more)

Susan

In my life story MS is just a minor chapter !

And, I have never learned how to tell short stories, so you may get bored and pass on this one :-}

I've read old novels.....like Charles Dickens...and stuff like Treasure Island (required reading in school ).....that start with......"I was was born......" so, this is what you are stuck with too !

I was born Sept. 21, 1952 just 20 miles from where I live today. . .  (more)

Your name, story, and photo can be right here in the spotlight, 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.

Cytoxan etc. (Cyclophosphamide) RemedyFind Susan ** 6/8//04
Cytoxan etc. (Cyclophosphamide) is an Immuno-suppressive drug that is usually given to treat Cancer. Cyclophosphamide blocks cell growth and also suppresses the immune system. Some studies, but not all, have reported benefits for patients with chronic progressive MS. Combinations of cyclophosphamide and corticosteroids are showing some promise in significantly blocking immune factors responsible for MS inflammation. Cyclophosphamide can have many side effects, including hair loss, nausea, vomiting, infertility, lung scarring, and blood abnormalities.
AARP Health Care Options AARP Susan ** 6/7/04
"I just found out about this in the AARP magazine...., there are lots of options, the long term care one is probably too expensive for most of us, but it's something to think about..."
Wheelchairparts.net Wheelchairparts.net Muff ** 6/8//04
The name says it all !  If you've got a WC. this is a site you need to be sure to check out.
180 Medical 180 Medical Muff ** 6/8/04
A wide variety of accessibility products available from this site.
The Cochrane Library National Institute of Clinical Studies and the Australasian Cochrane Centre PWMS 6/7/04
"The Cochrane Library brings together in one place research which looks at the effectiveness of different health care treatments and interventions. It is recognised as the best single source of information on the effects of health care." (Funded by the Commonwealth Government of Australia)  This appears to be a gateway to the Australian perspective.    
The Cochrane Collaboration The Cochrane Collaboration PWMS ** 6/7/04
"The reliable source of evidence in healthcare" Despite their questionable study on the effectiveness of Copaxone, this seems an interesting site to explore.  Let us know what you think.
DOCTOR'S GUIDE Doctor's Guide Susan ** 6/4//04
A wide ranging medical site covering all sorts of medical subjects - not just MS.  A good all -purpose reference.
Kool n' Safe Kool n' Safe Susan ** 6/6/04
Kool n' Safe has quite a range of cooling products - not just vests, with a more industrial orientation.  So when you want to look beyond an ice vest, this is the place to go !
StaCool Vest StaCool Vest Susan ** 6/6/04
"Designed for use by MS patients," these represent a solid middle ground in the cooling vest market arena.  If you are in the market for an ice vest, you certainly want to check these folks out.
Heat Illness Prevention Goes High Tech THE PHYSICIAN AND SPORTSMEDICINE Susan 6/1/04

An interesting article on Avacore's new rapid thermal exchange product.  Certainly out of the price range of many MS'rs, but suggestive of similar lower cost DIY solutions.  


News Sightings

Here's the latest, and there's a bit.  To avoid future stack-ups, we'll be updating the News Page as news breaks.  So check it out !

BioMS Receives Health Canada Clearance for Pivotal Phase II/III Multiple Sclerosis Trial

BiosMS

PWMS 6/8/04

"The double-blind, placebo controlled trial will enroll up to 533 patients at multiple sites.  Patients will receive intravenous injections every six months for a period of two years."    Every six months ?  Wow !  The memorable name of this chemical is MBP8298.  

Possible new second-generation multiple sclerosis therapy

 News-Medical.net

PWMS 6/8/04

The production of neutralizing antibodies against interferon-beta may reduce the effectiveness of recombinant interferon-beta (the standard-of-care treatment for RRMS) treatment in up to 30 percent of RRMS patients.  Scientists from Genencor International, Inc., have demonstrated . . . that a new variant of recombinant interferon-beta reduces the immunological response to the protein.  In other words, they appear to have found something that may not cause the buildup of a "tolerance" which lessens the effectiveness of interferons over time, for a fair number of people. And a second link to PR Newswire

Intranasal administration of interferon beta bypasses the blood-brain barrier

National Library of Medicine/PubMed

PWMS 6/8/04

The bottom line of this tortured abstract is that it "confirmed much greater delivery to the CNS with intranasal administration."   Of course, this is in rats, but it should hold true for humans.  Which portends trials of a non-invasive nasal version of the interferons.

COPAXONE(R) Reduces Brain Atrophy in MS Patients

PRNewsWire

Jack 6/8/04

"Study Represents the Third Time COPAXONE(R) has Demonstrated a Significant Effect on Brain Atrophy in RRMS."  "The results of this study reaffirm two previous studies." "Dr. Jerry S. Wolinsky, Bartels Family Professor of Neurology, The University of Texas Health Science Center at Houston, commented on the study findings. "Results from this study support an effect of glatiramer acetate on limiting brain atrophy."  OK, so this means Copaxone works, right ? (For the full article, search for Keyword = Copaxone on the PRNewsWire homepage.)

Researcher reports breakthrough on Multiple Sclerosis

BostonCure/Yahoo

PWMS 6/7/04

An Australian university researcher announced a breakthrough Monday in efforts to develop a vaccine that can help repair damage done to the nervous system by Multiple Sclerosis (MS). Tana Karnezis, a fellow at Melbourne's La Trobe University, found that inhibiting or removing a protein which prevents spinal nerve regeneration can significantly delay the onset of an MS-like condition in mice. The research also suggests that the protein, known as Nogo A, may have a hand in initiating MS, Karnezis said in a paper published online Monday in "Nature Neuroscience".  Very interesting research.  Note that it relates to what is initiating MS and delaying the onset.  So promising work on prevention which may be in clinical trials with 2 years.  

Small Trial Shows Daclizumab Add-On Therapy May Improve Multiple Sclerosis Outcome

Doctor's Guide

Susan 6/4/04

A small clinical trial of patients with multiple sclerosis (MS) who did not respond to interferon alone found that adding the human antibody daclizumab improved patient outcome. Patients who received the combined therapy had a 78 percent reduction in new brain lesions and a 70 percent reduction in total lesions, along with other significant clinical improvements. The trial was led by investigators at the National Institute of Neurological Disorders and Stroke (NINDS), a component of the National Institutes of Health.  Another promising combination therapy.

Potential synergistic effect of COPAXONE(R) and minocycline to be studied in relapsing-remitting multiple sclerosis

Canada NewsWire

PWMS 6/4/04

A new study assessing the add-on effect of minocycline in relapsing-remitting multiple sclerosis (RRMS) patients with active disease who are treated with COPAXONE(R) (glatiramer acetate injection) has just been initiated at four major investigation sites in Canada: Calgary, Vancouver, Edmonton and Montreal.  Apparently the minocycline has a quite dramatic effect.  Hopefully the study will show if it is an effective combination therapy.

Acne Drug Treats Multiple Sclerosis

Sports medicine Channel

Share 6/3/04

"A drug currently used to treat conditions including acne has been found to decrease the lesions in the brains of people with multiple sclerosis. Researchers from the University of Calgary in Alberta treated 10 patients with relapsing-remitting multiple sclerosis with the drug minocycline. Patients had a magnetic resonance imaging (MRI) performed before the study and then four weeks later."  A very small study, over a very short period.  However, the same doctor is also conducting a study of minocycline when combined with Copaxone.  So it might lead to something.

Glatiramer Acetate Provides No Significant Effect in the Treatment of Multiple Sclerosis

PRNewsWire/Cochrane Group

PWMS 5/27/04

MILAN, Italy, May 27 /PRNewswire/ -- One of the currently most widely prescribed treatments for multiple sclerosis (MS), glatiramer acetate (Copaxone(R), Teva / Aventis), may provide no significant benefit on the main outcomes measures in the disease, namely either slowing the progression of MS or substantially affecting the risk of clinical relapses over time. "At present there is insufficient evidence to support future routine use of glatiramer acetate in clinical practice and more data from randomised clinical trials are needed," said Dr Munari, neurologist and member of the Cochrane MS Review Group.  OK, this is a very interesting result not found elsewhere.  Perhaps the study was conducted to find the desired results, since Cochrane is based in the UK where the NICE recommendation is no drugs.

ANTEGREN® Formally Submitted to FDA for Approval, Based on One Year Data

BiogenIDEC

PWMS 5/25/04

Formal filing occurred on May 25, following up on BiogenIDEC's statement which we reported on February 26. The submission includes one-year data from two ongoing Phase III trials. The companies are committed to completing these two-year trials. In order to protect the integrity of the trials, the companies are not disclosing the one-year data at this time. Presumably the early results are very encouraging.  Some neurologists speculate that FDA review may take just long enough that the second year of the trial will be completed, and request the 2 year results before approval.

Is the National Institute for Clinical Excellence doing a good job?

BBC News

PWMS 5/25/04

"...Five years on and even the institute itself admits it is not having as big an impact as it had hoped. By the end of this year, NICE will have issued 150 different guidelines, all of which are supposed to be binding. These range from a recommendation that IVF should be available on the NHS to a decision to restrict some multiple sclerosis drugs.  Way to go, NICE.  If the recommendation to discontinue MS drugs wasn't big enough, what would be a big impact?  


Tips & Tricks

What's your favorite Tip or Trick for making life easier with MS ?


New on the Website

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Helping Chatters Get Into Chat

People continue to have difficulties getting into Dreamchat.  Tell us in detail what you have to do to a firewall, anti-virus program, or Pop-Up blocker program in order to get in.  If you had to upgrade your Windows or Internet Explorer Service Pack, tell us from what, to what.  We will start a page devoted to all the different problems people have had, and how they have overcome them, as a resource page for new chatters.

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.

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News Letter Archive

Missed something from an old Newsletter?  Find it here !

6-11-04
5-31-04 5-21-04 5-15-04 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

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