Multiple Sclerosis Community
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Our Patient-to-Patient MS Forum is where you can communicate with other people who share your interest in Multiple Sclerosis. This forum is not monitored by medical professionals.

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MS RESOURCES ON THE WWW

visit the
MS Information Index
  visit the
MS Community
Information Index MS 
Community Information & Resourses
Community

 
OUR FAVORITE MS WEBSITES
– at least a few of them!


What makes a website worth visiting? It should be easy to use and informative, but most of all it should be accurate and present realistic information about Multiple Sclerosis.

 


We have asked our members to submit their nominations for "favorite MS websites" and the following is their list. They are organized somewhat by topic area for easier reference, and the recommending member’s name is listed at the end in ( ).


We have left most .com websites off of this list because we don’t want to appear to be endorsing any website that is commercial, however we have included a few (like the drug company sites).


We hope as you read this list and visit these sites you will add to the descriptions or send us new websites to include.

 

 

 

1st Note: DO NOT USE MS WORD TO CREATE ANY TEXT FOR A HEALTH PAGE - IT IS NOT COMPATIBLE AND WILL CORRUPT THE HEALTH PAGE.

2nd Note: We have had mixed luck with the links on this page. You may have to copy the web address and paste it into a separate browser window.
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SUPPORT GROUPS
Of course
www.medhelp.org/forums/show/41
tops our list, but there are other groups out there doing fine work bringing MS patients, friends and family together.

National Multiple Sclerosis Society
www.nationalmssociety.org

Multiple Sclerosis Society, United Kingdom
www.mssociety.org.uk

Multiple Sclerosis Association of America

www.msassociation.org

Multiple Sclerosis Resource Center
www.msrc.co.uk
(Dorna)

Multiple Sclerosis International Foundation
www.msif.org

National Multiple Sclerosis Foundation
www.msfacts.org

Consoritium of Multiple Sclerosis Centers
www.mscare.org

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DIAGNOSING MS

This comprehensive site has a little bit of everything, including a clear explanation of how MS is diagnosed. This is the Home Page for Partners MS Center at Brigham & Women's Hospital, Harvard University:
www.partnersmscenter.org
(doublvision)

The American Academy of Neurology has a site that allows you to look at what a neurologist looks for when making the diagnosis of MS. Although it is not an in-depth explanation of MS, the site is included here because it also breaks down the diagnosis process of other neurological diseases and disorders, such as migraines, epilepsy and stroke.
www.thebrainmatters.org
(Lulu)

I like this one because of the lists of symptoms and comparisons...
http://www.msakc.org/Articles/MSFibroLupus.htm
(Wonko)

MEDICAL TREATMENTS FOR MS

Medical treatments can be broken into two categories – the Disease Modifying Drugs (DMD’s) that are meant to alter the course of MS; and the treatment for symptoms - these are drugs and therapies that can be used to alleviate the every day symptoms of MS. Information on these drugs for symptoms can be found on the web and are perhaps too numerous to list here.

The MS Society of the UK has built an interactive guide that walks you through the process of deciding which DMD might be right for you, depending on many factors that it asks . I found this tool very helpful in understanding the differences in the drug treatments.
http://www.msdecisions.org.uk/
(Lulu)

DMD’s – these are the company-sponsored MS support program websites for their respective drugs.

Avonex – www.avonex.com

Betaseron – www.mspathways.com

Copaxone – www.sharedsolutions.com

Rebif – www.mslifelines.com

Tysabri – www.tysabri.com

NEUROLOGICAL TESTING AND INFORMATION

No MS diagnosis is ever made without a neurological examination. These sites tell you what is involved so you can relax, be prepared, and make the most of your time with the neurologist.

American Academy of Neurology is at www.aan.com/go/public

The Precise Neurological Exam for NYU Students
This contains links that explains in depth the 7 areas that should be covered in a neurological exam. It explains how each test should be preformed, and it also shows after each test what problems could occur, and what part of the body's system they could be linked to.
http://edinfo.med.nyu.edu/courseware/neurosurgery/
(Sunny)

The Neuro Exam
This is my favorite and goes through a very thorough exam.
www.neuroexam.com/content.php?p=2
(Shell)

LABORATORY TESTS

Do you wonder what those labtests are for that your doctor ordered, or what the results mean? This site is put together by laboratory technicians with insider information of all those tests. An extra bonus - it is international and you can look at test standards for other countries besides the US.
www.labtestsonline.org
(Lulu)

The following website was very helpful for me in understanding the oligoclonal banding issue that was so hard for me to wrap my brain around. I hope it may be helpful for someone else.
www.aini.it/files/pdf/48094.pdf
(Julie)


MRI’s AND OTHER PHYSICAL TESTS USED FOR DIAGNOSING MS

My new all time favorite MRI explanation for MS is at
http://www.radiologyassistant.nl/en/4556dea65db62#p4594f74ccbf19
This site in the Netherlands explains in words with accompanying pictures many of the MS mimics as well. Thanks to Jensequitir for finding this site!

 

 

www.scribd.com/doc/8817608/MRI-Atlas-of-MS-Lesions

A great find from PatH - lots of images of MS lesions along with thorough explanations of what you are seeing in eachMRI photo.

 

Magnetic Resonance Technology
MR I- TECHNOLOGY TIPS, IMAGES, SEQUENCES, ACROYNMS
www.mr-tip.com/serv1.php?type=welcome
(???)

Also on the Consortium of Multiple Sclerosis Centers website is their MRI for MS protocol which people ask about periodically:
www.mscare.org/cmsc/Vancouver-2003-Guidelines-for-a-standardized-MRI-protocol-for-MS.html
(Shoshin)

The Summer 2008 issue of MSPerspectives has an excellent illustrated article on MRI’s, including shots of lesions with full explanations. This really helped me to understand what I was seeing on my own films. (It is the issue with the man holding the baby in the air of the cover, if that helps!)
www.msperspectives.com
(Lulu)


MS RESEARCH

Sponsored by the US National Institutes of Health , this is the US Government’s clearinghouse site for all drug trials being conducted in the United States and around the world. You can do a search specific to MS and/or your part of the country. If the cost is keeping you from getting treatment, you may want to consider volunteering for a trial where your costs may be covered (something to talk over with your doctors).
www.ClinicalTrials.gov
(Lulu)

What does the future hold in the laboratory for MS patients? Accelerated Cure Project for Multiple Sclerosis

www.acceleratedcure.org:8080/stories

The Accelerated Cure site also has a lot of interesting info. They are trying to fund research to understand the causes of MS in order make it easier to find a cure (after six years of idiopathic peripheral neuropathy, i.e. we're clueless as to what is causing your problem and there's nothing to be done about it that isn't completely random, this approach really appeals to me). The have what they call "cure map" documents at
www.acceleratedcure.org/curemap/docs.php

They talk about what is known about MS and genetics, nutrition, pathogens, toxic agents, and trauma, as well as their own research and development of "a large-scale collection of biological samples and data from people with multiple sclerosis, selected other demyelinating diseases, and unaffected controls" for use by researchers (if you live near one of the centers they're associated with you might want to participate in this).
(Shoshin)

Another worthwhile project (that is easier to participate in because all you have to do is fill out questionnaires) is the North American Research Committee On Multiple Sclerosis (NARCOMS) Project (patient registry) at
www.mscare.org/cmsc/CMSC-NARCOMS-Information.html
(shoshin)

Brand new website, The Atlas of MS Database. The most comprehensive study of its kind ever undertaken, the Atlas of MS, was launched 17th September 2008 at the World Congress on Treatment and Research in MS in Montreal, Canada (www.msmontreal.org). The Atlas of MS contains information and data from 112 countries worldwide.
www.atlasofms.org
(doublevision)


NEW DEVELOPMENTS

Multiple Sclerosis News From Medical News Today
www.medicalnewstoday.com/sections/multiple_sclerosis

MSIF (Multiple Sclerosis International Federation)
www.msif.org/en/research/ms_research_news/index.html

(Shoshin)

MISCELLANEOUS

I like HealthTalk.COM. It is not unlike this site in that it has several different health issues you can click on and also has a blog. There are Health Talk.com live broadcasts once a month and I think they have RSS feed. I have that podcast on my mp3 player. The broadcasts are available either by phone or online and you can submit questions to the panel ahead of time.
(GrannyJo)

There are tons of archived interviews here at healthtalk, but I found this one very helpful.
healthtalk.com/go/multiple-sclerosis/webcasts/the-latest-on-visible-and-invisible-signs-of-ms
(Lulu)

The Consortium of Multiple Sclerosis Centers presents a special Web-based Video Presentation: Evaluation and Management of Spasticity in Multiple Sclerosis
www.mscare.org/cmsc/Spasticity-in-Multiple-Sclerosis-Presentation-Preview.html
(Shell)

A Canadian website all about MS
Has an "Ask the Expert" feature as well as E-bulletins you can subscribe to
www.msanswers.ca

IT’S THE LAW

Understanding the American with Disabilities Act a publication of United Spinal Association. This is a very good downloadable 32 pg. document.
UNDERSTANDING ADA pub of United Spinal Assoc.
www.unitedspinal.org/pdf/understanding_the_ada.pdf
(Shell)

ASSISTIVE TECHNOLOGY
Need help getting a wheelchair, scooter, computer or other things that will improve the quality of your life? This site lists all the state contact information for such help. I’m not sure if there is such a clearinghouse in Canada.


"The 56 state and territory programs are funded under the Assistive Technology Act of 1998, as amended. State Assistive Technology Act programs work to improve the provision of assistive technology to individuals with disabilities of all ages through comprehensive statewide programs of technology-related assistance. Additionally, the programs support activities designed to maximize the ability of individuals with disabilities and their family members, guardians, and advocates to access and obtain assistive technology devices and services. "
www.resna.org/content/index.php?pid=135
(lbradley35)

JUST FOR FUN

Because we do have a life outside of Multiple Sclerosis!! Here’s a sample of what some of our members enjoy in their down time…
Warchant.Com FSU Football!
(Richard)

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