
First, remember that this is a chat room, not a support group per se. Most people here are more than willing to help people with questions, but many of our friendships over time have become incredibly strong and go far beyond our shared interest in MS and related issues. So don't be surprised if everyone but you seems to know everyone else or if the topics being discussed in the room have nothing at all to do with MS...don't be concerned; jump in and ask whatever questions you have. Most, but not all, of the people here have MS and many know quite a bit about it; usually someone in the room will take the lead and offer information or a suggestion.
Please use bold font and dark colors when you type in the chat room. Many with MS have vision problems and using bold type helps us see *you* more easily.
If you don't get an answer, ask again. Please understand that it's inappropriate for even the best informed people here to answer medical questions. We're not doctors, and there is no substitute for a good doctor's care and advice.
As you learn more about MS you'll probably become a little wary of anecdotal information, which may not always lead you to an accurate conclusion, particularly with something as unpredictable and uncertain as Multiple Sclerosis. We encourage you to read everything you can about MS, ask your neurologist questions, and take an active role in your health care. If you think you may have MS and you're not yet seeing a neurologist, ask your doctor for a referral; there's a link below that can help you find one in your area. Continued below
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MS Chatters©
About Us & Our Chat Room
Welcome to the Multiple Sclerosis Chat Room!
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Pretty much any time of day or night you'll find nice people here. Every once in a while we get a
jerk or two, but we have a way better batting average than almost any other AOL chat room
on that front.
To come back again, save the room in your Favorite Places by clicking on the red
heart at the top right of the chat room screen.
The hard way is to click on People, then Find A Chat, click on the tab that says Rooms Created By
AOL Members, double click on Life, and scroll down until you find MULTIPLE SCLEROSIS. Mostly
we're all here for the same reasons: information, support, and friendship.
More About Us
Want to know more about us, or
view many of our members photos?
Visit the full MS Chatters Website
at MS CHATTERS WEBSITE
Latest News
Some Notes About the Chat Room!
MS Info
You may encounter a range of
statistics; while some may be
inflated it's also clear that many
people may have undiagnosed
MS. The most common estimates
suggest that there are over
450,000 people living with MS in
the United States and 2.5 million
worldwide. There are around
10,000 people diagnosed in the
US each year. And every day,
there are new people coming into
this chat room looking for
information.
Everyone here was that new
person once, and we understand
how it feels. So whether you've
had MS for years, or you have just
been told that it may be the cause
of your symptoms and have been
referred for testing, or perhaps you
came in because someone you
love or care about has or may
have MS, here's some information
that we hope is helpful. Because
especially at first, there are a lot
more questions than answers
about MS. You can click on the
embedded links in blue, or cut and
paste the web addresses shown
into your browser.

your neurologist questions, and take an active role in your health care. If you think you may have MS
your neurologist questions, and take an active role in your health care. If you think you may have MS
and you're not yet seeing a neurologist, ask your doctor for a referral; there's a link below that can
help you find one in your area.
help you find one in your area.
As with any chat room, we sometimes have people come in who are rude or disruptive.
Responding to them at all tends to encourage them. The first person to open the chat room
becomes the room "owner" and as such has control of an option called the "bolt" with the power to
EJECT snerts and harassers. However, if that person leaves without closing the room, then the
room is 'boltless'. At such times the use of the IGNORE feature on AOL is the best way to deal with
them: double click on the offensive person's screen name in the box on the right side of the chat
window, then click on the Ignore Member check box at the top of the selection window that opens.
When you close out of that window, you will no longer see anything that person types in the chat
room for the rest of that session on AOL or until you repeat the process and uncheck the box.
MORE HELPFUL LINKS
Direct Links-Information on Common Tests used in the sometimes lengthy process of Diagnosing
Multiple Sclerosis Neurological Diagnotic Overview
http://webmd.lycos.com/content/asset/yale_lab_tests_how_your_doctor_diagnoses_neurologic
al_disorders.html Evoked Potentials
http://webmd.lycos.com/content/asset/yale_lab_tests_test_name_evoked_potentials.html
Electromyography (EMG)
http://webmd.lycos.com/content/asset/yale_lab_tests_test_name_electromyography_emg_and
_nerve_conduction_velocity_ncv.html Lumbar Puncture (Spinal Tap)
http://webmd.lycos.com/content/asset/yale_lab_tests_test_name_lumbar_puncture_lp.html
Another Lumbar Puncture Page
http://www.health.harvard.edu/fhg/diagnostics/lumbar/lumbar.shtml Magnetic Resonance
Imaging (MRI)
http://webmd.lycos.com/content/asset/yale_lab_tests_test_name_magnetic_resonance_imagin
g_mri_of_the_brain_and_spinal_cord.html Another MRI Page
http://www.health.harvard.edu/fhg/diagnostics/MRIhead/MRIhead.shtml Yale Medical Tests
Guide Contents http://webmd.lycos.com/yale_books the contents page from the guide which
includes all the above test descriptions Questions to Discuss with your Doctor
http://www.health.harvard.edu/fhg/doctor/MS.shtml
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Direct Links - Fatigue
http://www.nationalmssociety.org/Sourcebook-Fatigue.asp NMSS
http://www.msif.org/en/symptoms_treatments/ms_by_topic/fatigue/index.html MSIF
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Direct Link - Cognitive Problems
http://www.nationalmssociety.org/Sourcebook-Cognitive.asp NMSS
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Direct Links - Sexual Problems
http://www.nationalmssociety.org/Sourcebook-Sexuality.asp NMSS
http://www.msif.org/en/symptoms_treatments/relationships_intimacy_sexuality/sexual_changes/ind
ex.html MSIF
http://www.msif.org/en/symptoms_treatments/relationships_intimacy_sexuality/womens_issues/in
dex.html MSIF - Women's Issues
http://www.msif.org/en/symptoms_treatments/relationships_intimacy_sexuality/mens_issues/index
.html MSIF - Men's Issues
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The Pharmaceutical Companies
The four drugs most frequently used in the US to slow early progress of Relapsing Remitting MS,
Avonex, Betaseron, Copaxone, and Rebif, all have useful websites, as do some other therapies
and commonly prescribed medications.
Two things to remember about these sponsored sites, which do provide useful information, news
and features - these companies are marketing products, which could influence content; they imply
therapeutic neutrality, but some comparison pages could be seen to favor a particular therapy in
both the facts it includes and those it does not. Also, some require registration with personal
information and e-mail address to access content like webcasts; some dislike this as a privacy
issue. We gratefully acknowledge their many invaluable contributions to our MS community
through their initiatives and through unrestricted grants.
http://www.avonex.com Avonex Interferon b 1a http://www.msactivesource.com MS ActiveSource
MS info site sponsored by Avonex manufacturer Biogen; 27 minute video adapting to life with
multiple sclerosis" in Multimedia section is good to help friends and family understand MS; fast
internet connection is recommended.
http://www.betaseron.com Betaseron Interferon b 1b http://www.mspathways.com MS Pathways
MS info site sponsored by Betaseron manufacturer Berlex
http://www.multiplesclerosis.com
http://www.copaxone.com/home.html Copaxone Glatiramer Acetate
http://www.sharedsolutions.com Shared Solutions MS info site sponsored by Copaxone
manufacturer Teva-Marion Partners
http://www.rebif.com Rebif Interferon b 1a
http://www.novantrone.com Novantrone Mitoxantrone
http://www.tysabri.com/tysbProject/tysb.portal?utm_content=NowAvailable&gclid=CLWpnoaOvooCF
RgYgQodGnyafw Tysabri (natalizumab)
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Patient Assistance Programs Info
http://www.needymeds.com/ NeedyMeds.com http://www.rxassist.org Robert Wood Johnson
Foundation http://www.phrma.org/pap/ PhRMA
http://www.medicare.gov/Prescription/Home.asp Medicare Prescription Drugs Assistance
Program
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Questionable Therapies/Quackery
http://www.quackwatch.com/01QuackeryRelatedTopics/ms.html MS Quackwatch
http://www.healthwatcher.net/Quackerywatch/MS/index.html Canadian Quackery Watch
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Complementary and Alternative Therapies Info
http://www.ms-cam.org MS-CAM
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Assistive Technology Info
http://www.sammonspreston.com Sammons Preston Rolyan
http://cat.buffalo.edu/rerc-aging/rerca-link.php Project Link http://www.abledata.com Assistive
Technology Information http://www.rascalscooters.com Rascal Scooters
http://www.orthokinetics.com Orthokinetics/Lark of America ttp://www.pridemobility.com
Pride Mobility Corporation http://www.pacesaver.com/prodpage.htm Leisure-Lift
Two Final Thoughts
MS isn't the end of the world. Nor is it who we are. It's something we live with, and it's sometimes
important to remember that no matter what we have to deal with, there are many much worse off
than we.
There was a man who served as a mentor for me when I was younger. I asked him years later how
I could ever repay him for his help and inspiration. He simply smiled and said, "Do it for others."
- Tom & Lin
The information contained in this email/web page is neither intended nor implied to be a substitute for
professional medical advice. Always seek the advice of your physician or other qualified health care provider prior
to starting any new treatment or with any questions you may have regarding a medical condition. Agencies or
organizations listed are included for informational use only, and such inclusion does not imply endorsement.
Tom, a longtime regular, compiled
and for a long time updated this
welcome kit regularly. AOL's
restrictive email regulations have
made it easier and safer for us
and for you, the newcomer to our
group, to receive this information
in web based format.
Welcome
13 Feb 2007
Lin's Daily Notes: An LDN Journal
A chronicle of the effects of Low Dose Naltrexone (LDN) on Multiple Sclerosis. Lin is a long time member of the chat room, as well as creator of the website, and the registered mass mailer for MS
Pictured above, Dec 2005, with granddaughter, Vienna Cassidy.
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See more member photos Click on Members Photo Album tab
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Patient Advocates With Multiple
Sclerosis Fund Clinical Trial Of
Promising Drug That Has Already
Helped Thousands
13 Feb 2007
Over the last decade, anecdotal
reports suggested that a very low
dose of an FDA-approved drug
called naltrexone provides effective
symptom relief for many patients
who suffer from Multiple Sclerosis.
Frustrated by the lack of scientific
research, volunteers began raising
money to fund a human clinical trial
of Low Dose Naltrexone (LDN) for
MS. This effort culminated in
awarding a $25,000 gift to the
University of California, San
Francisco Multiple Sclerosis
Research Center.
Click Here To Read The Rest Of
This Article
'Benign' MS May Not Be So Benign
People who have multiple sclerosis
(MS) for 10 years and have few of the
disabling symptoms of the disease
are often told they have "benign MS"
and that their symptoms will likely
not ever occur to the same extent as
other people with MS. A new study,
published in the February 13, 2007,
issue of Neurology®, the scientific
journal of the American Academy of
Neurology, shows that unfortunately
this may not be correct.
After 20 years, the disease had
progressed in nearly half of those
whose MS was benign at 10 years,
according to the study.
Click Here To Read The Rest Of
This Article
19 Feb 2007
Having Insurance Doesn't
Necessarily Mean Affordable Care
For MS
A Harvard-based study of insurance
coverage involving a nationwide
sampling of people with multiple
sclerosis found that although they
had higher than average rates of
insurance coverage, many
experienced financial strain related to
obtaining adequate health care,
including paying for their
medications. The study,
commissioned by the National MS
Society, was conducted by Drs. Lisa
Iezzoni and Long Ngo and published
in an early online release January 29,
2007 in the journal Multiple Sclerosis.
Click Here To Read The Rest Of This
Article
29 Jan 2007
Multiple Sclerosis Rates Up
50%
Review Tracking Neurological
Disorders Shows 1 in 1,000
Americans Have Multiple Sclerosis
By Miranda Hitti WebMD Medical
News Reviewed By Louise Chang,
MD on Monday, January 29, 2007
Jan. 29, 2007 -- Multiple sclerosis
(MS)Multiple sclerosis (MS) may be
50% more common in the U.S. than
previously thought, according to a
new research review.
The review from the National Institute
of Neurological Disorders and Stroke
says almost one in 1,000 people in
the U.S. have MS.
However, the National Multiple
Sclerosis Society says that figure
could still be low.
The society points out that the
review's estimate of MS prevalence
(the number of people with MS)
works out to about 266,000 people.
But the society says it has "over
300,000 people" in its database who
say they have MS.
Click Here To Read The Rest Of This
Article
29 Jan 2007
One of the best, most informative and humorous web sites on the Net, written by a man who refused to let MS rob him of his sense of self and humor.
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Elan CFO: Tysabri could post
revenue over $300 million in 2007
Last Update: 9:01 AM ET Feb 20, 2007
DUBLIN (MarketWatch) -- Elan
Corp. PLC's (ELN) chief financial
officer said Tuesday that, based on
the current patient take-up, its
multiple sclerosis drug Tysabri
could make more than $300
million in 2007. Speaking on a
media conference call, Elan CFO
Shane Cooke emphasized that
this was a rough estimate rather
than an official company forecast,
adding that there are 400,000
patients on existing MS treatments
worldwide.
"Tysabri will be a blockbuster drug
and eclipse all competing
products over time provided the
safety profile is consistent ...
Revenue expectations depend on
how the patient take-up continues
during 2007," he said.
However, most analysts say $300
million is conservative. NCB
Stockbrokers, which has a buy on
Elan, forecasts $450 million
Tysabri revenue in 2007. Merrion,
which has a hold rating, predicts
$360 million. Cooke also said he
expects Elan's revenue - excluding
Tysabri - to exceed $500 million in
2007.
CLICK HERE TO READ THE REST
OF THIS ARTICLE
20 Feb 2007
TYSABRI Information Digest added to MS Chatters web site 20 Feb 2007 Click on this link: TYSABRI INFORMATION
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Latest News
Recommended Reading... Up the Creek With a Paddle: Beat MS & Many Autoimmune Disorders with Low-Dose Naltrexone (LDN)
See book cover graphic at right, available at Amazon.com (click on graphic)
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