Resources, Useful Websites & Clinical Trials [Archive]

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Cherie

08-26-2006, 10:44 AM

RESOURCES AND LINKS

I thought it might be helpful to start a list of links for resource or research for you to have available. Because I compiled this list more than a year ago, there may be some inactive links. Please let me know if you find one so I can remove it.
Cherie

http://www.medmarketplace.com/index.asp. New and used medical equipment.

www.CLAMS.org stands for Computer Literate Advocates for MS and this site provides excellent search resources on topics related to MS that come from reputable MS sources.

http://www.mult-sclerosis.org provides a search engine for topics related to all areas of MS care and treatment. There is also a medical encyclopedia and drug reference guide available along with many other features.

http://www.fda.gov Provides a link to the FDA's database of safety, interactions, reporting protocols. It also offers a dietary supplement listing with warnings of interactions and safety. You may research most currently used medications on this site for product information.

www.healthtalk.com has webcasts for patient education and listing of articles pertinent to treatment, symptom management and wellness.

MS Organizations

Multiple Sclerosis: Articles by a Physician with MS (Highly extensive MS information and archives. Be sure especially to check out the "library.")
http://www.ms-doctors.org/gmarone.shtml

Multiple Sclerosis Foundation (Includes an "Ask an MS Doc" forum as well as a general MS discussion forum. The "Ask an MS Doc" forum includes extensive archives of questions and answers. Includes help with finding an MS specialist.)
http://www.msfacts.org/

Multiple Sclerosis Online Information and Support (Books and information on living with MS. Includes financial aid information.)
http://www.msworld.org/

National Multiple Sclerosis Society - index (Extensive MS information and archives. Includes help with finding an MS specialist.)
http://www.nationalmssociety.org/

MS Society of Australia - MS information
http://www.msaustralia.org.au/msinformation/index.htm

General MS Information

About Search - Find it now! (MS Information) (A great search resource for MS information. It often turns up articles you wouldn't find other places.)
http://search.about.com/fullsearch.htm?terms=multiple%20sclerosis

MEDLINEplus: Multiple Sclerosis (One of the top research resources for medical professionals. Requires a membership; however, membership is free and open to all)
http://www.nlm.nih.gov/medlineplus/multiplesclerosis.html

Multiple Sclerosis Education and Medical Information from the Experts (An extensive MS website that includes interviews with various MS experts. They also sponsor live chats where you can ask various experts questions.)
http://www.healthtalk.com/msen/index.html

Multiple Sclerosis Glossary: Index (Alphabetic reference guide for MS-related medical terminology.)
http://www.geocities.com/HotSprings/3468/gloss.html

MS-Network.com (Extensive links to MS articles and news.)
http://www.ms-network.com/newsflash/main.asp?currentPage=1

Multiple Sclerosis Only-Q&A (Questions and answers about MS from leading neurologists.)
http://www.msonly.org/library/qa/qa.html

"Multiple Sclerosis: The Facts" (An in-depth explanation regarding the process of demylination. It includes many links to other abstracts and articles with more information.)
http://www.albany.net/~tjc/19-01.html

MS University (A really great resource. At this website you can go through a tutorial and get a "degree" in MS. It's free too.)
http://www.msuniversity.com/classes/classes.asp?type=10&id=22&title1Str=Senior%3A+MS+Research+Classes

News - TopAbstracts in Multiple Sclerosis 07/17/2003
http://www.docguide.com/news/content.nsf/news/06B9FF66F38A076485256D67000C0246?OpenDocument&c=&count=10&id=25EBE0BA6F8AFA2785256C93005DAFA4&abd=yes

Wayne University--MS (Basic information on understanding MS. Includes pictures and illustrations about demylination.)
http://sun.science.wayne.edu/~bio340/StudentPages/Trpkovska/ms.html

Welcome to MSWatch (Includes an "Ask an Expert" forum, message boards, discussion boards, research resources, and MS University.)
http://www.mswatch.com/MSWatch/home/community.asp?

Information on Specific MS Symptoms [/B
Auditory Dysfunction and Multiple Sclerosis (Auditory Dysfunction and Multiple Sclerosis: A Silent Concern -- According to this article, auditory problems are not so rare with MS.) http://www.vard.org/va/99/HEARING.HTM

MS Symptoms (A basic listing and description of MS symptoms.)
http://www.medsupport.org/ms/mssymptoms.htm

MS Tremor (Basic information on tremor.)
http://www.msnet.org/symptoms/tremor.htm

Pain in MS--Department of Veterans Affairs
http://www.vard.org/jour/02/39/2/pdf/kerns.pdf

The Pain of Irresponsible Pain Management (Medscape article, "...In a turnaround of events, hospitals and physicians are now facing increased legal accountability for inadequate pain management. In 2001 a California court held that the lack of proper pain management violates the state's elder abuse law. This state court decision is important in that punitive damages were awarded to the family under the elder abuse statute but would not have been available in a common law finding of medical negligence...."
http://www.medscape.com/viewarticle/458964?mpid=17232

Respiratory Dysfunction In Multiple Sclerosis (Abstracts dealing with respiratory dysfunction in MS.)
http://www.albany.net/~tjc/breathing.html

Tremor In Multiple Sclerosis (Abstracts dealing with tremor in multiple sclerosis.)
http://www.albany.net/~tjc/tremor.html

WE MOVE - Spasticity Bibliography (Extensive professional information resource on spasticity.)
http://www.wemove.org/spa_msbib.html

[B]MS Diagnosis

Brain -- Abstracts: Filippi et al. 121 (10): 2011 (A multi-centre longitudinal study comparing the sensitivity of monthly MRI after standard and triple dose gadolinium-DTPA for monitoring disease activity in multiple sclerosis. Implications for phase II clinical trials.)
http://brain.oupjournals.org/cgi/content/abstract/121/10/2011

Diagnostic Criteria for Multiple Sclerosis - multiple sclerosis encyclopaedia
http://www.mult-sclerosis.org/DiagnosticCriteria.html

Multiple Sclerosis Center - Practice Guidelines (Diagnostic guidelines for MS. Written for physicians. Extensive information on the differential diagnosis of MS.)
http://server3.mgh.harvard.edu/cndsites/msc/physicianinfo/practice/

Multiple Sclerosis - NeuroHaven (Basic information on the diagnostic criteria, diagnostic process and treatment of MS. Includes a picture of an MRI image showing MS lesions.)
http://www.neurohaven.com/ms1.htm

MS Forums

MSWorld Forums - General Questions and Answers about Multiple Sclerosis (MS message board by MS World)
http://www.msworldboards.org/vbulletin/

MRI Information

Howstuffworks "How MRI Works" (From the How Stuff Works website. In depth information on MRI.)
http://www.howstuffworks.com/mri.htm

MRI (Extensive information on imaging technology for professionals.)
http://www.spectroscopynow.com/Spy/basehtml/SpyH/1,,9-4-17918-0-17918-directories--0,00.html

MS Specialists

BestDoctors.com: Multiple Sclerosis: What Is The Chance Of Multiple Sclerosis (Q & A about MS by an MS specialist. Extensive doctor listings.) http://www.bestdoctors.com/en/askadoctor/c/cohen/jacohen_011700_q4.htm

CLAMS Good Docs (A listing of MS specialists in the US. This is not a complete listing, but it is still fairly extensive.)
http://clams.org/goodocs.html

http://www.msneuroratings.com

http://www.multiplesclerosis.com/

Website with encyclopedia, current articles, online chats, resources on research data.

http://www.direct-ms.org/articles/Vieth-VitD-Review
http://www.direct-ms.org/

Articles in pdf format on treatment options, diet and supplements that are indicated to help treat MS symptoms.

http://www.mult-sclerosis.org/VisuallyEvokedResponse.html
http://www.direct-ms.org/
Encyclopedia of MS Terms and definitions

http://www.veritasmedicine.com/trial/trial_questions.cfm?did=121&bif=p&pg=1&cid=72576
http://www.veritasmedicine.com/
Clinical trials for MS info

http://www.abstracts-on-line.com/abstracts/AAN/search/standard_search.asp?Num=0%2E2107769 http://www.abstracts-on-line.com/
American Association of Neurologists Abstracts on research articles

Cooling products: www.steelevest.com www.heatreliefdepot.com www.msaa.com (cooling program) www.msfocus.org (patient services)

Learn how to care for your wheel chair, scooter or powerchair.

www.wheelchairmedic.com
www.peakwheelchairs.com

The following link is sponsored by the Multiple Sclerosis Foundation and is fairly comprehensive about clinical trials at all levels throughout the USA.

www.centerwatch.com/ctrc/MSFocus/index.html

Cherie

08-28-2006, 08:01 PM

Stuart S. has started a repository for MS information. He sent me this yesterday as a link to some of that information:

Hmm- You wonder where to go and what to do. Well for starters, please Click on this link: http://www.msviewsandrelatednews.com (Save this LINK to your favorites)
Then click where it says to click for stuart's blog.

To find something, go to the search screen and type something you seek. Like for instance, Prescription Assistance... and OUILA, it will open provide all the articles that I have archived, concerning prescription assistance.

wannabe

09-01-2006, 01:27 PM

Think you have MS? What conditions look like MS?

The Differential Diagnosis in MS:

http://jnnp.bmjjournals.com/cgi/content/full/71/suppl_2/ii9

Cherie

09-15-2006, 09:07 PM

http://www.needymeds.com/

This link was emailed to me today. Seems to help you connect to sources of medication reimbursement in your area and is linked to local yellow pages.

SallyC

09-17-2006, 12:31 AM

People ask me about my MS med..LDN, so here is the LDN Homepage, for anyone, who wants to find out more about it.
[/URL]
[URL]http://www.lowdosenaltrexone.org/ (http://www.lowdosenaltrexone.org/LDN)

SallyC

09-25-2006, 01:03 AM

People ask me about my MS med..LDN, so here is the LDN Homepage, for anyone, who wants to find out more about it.

http://www.lowdosenaltrexone.org/

Here is another good link. "What is MS"

http://www.reutershealth.com/wellconnected/doc17.html

Cherie

09-26-2006, 04:51 PM

www.msnewschannel.com

Searches multiple websites and journals for headlines and abstracts pertaining to MS each week.

www.msviewsandrelatednews.com
click to read Stuart's Blog

Stuart does extensive searches for information relating to MS and posts it on his blog. Many are professionally done articles and are noted as such. Some are life success stories.

0357

10-03-2006, 08:46 PM

National MS Society's Sourcebook (contains much information from ABCR drugs, to diagnosis, to symptoms, etc.)
http://www.nationalmssociety.org/Sourcebook-Topic.asp

MS Glossary:
http://www.nationalmssociety.org/glossary.asp

MS Brochures:
http://www.nationalmssociety.org/brochures.asp

MS Brochures in Spanish:
http://www.nationalmssociety.org/Brochures-EnEspanol.asp

Mentions things to consider before your first neurologist's appointment and issues to consider too during your appointment:
http://www.nationalmssociety.org/Brochures-HCProvider.asp

US MS Clinics:
http://www.nationalmssociety.org/Treatment%20Locations.asp

Link to good neurologists in Canada and the US:
http://www.msneuroratings.com/

Another link to good neurologists in Canada and the US:
http://clams.org/goodocs.html

MS Medications:
http://www.jsumption.com/imssf/modules.php?op=modload&name=Sections&file=index&req=viewarticle&artid=61&page=1
http://www.nationalmssociety.org/Medications%20Used%20in%20MS.asp

Brochure about Bladder Problems and MS:
http://www.nationalmssociety.org/Brochures-Controlling%20Bl.asp

Article about MS Fatigue:
http://www.jsumption.com/imssf/modules.php?op=modload&name=Sections&file=index&req=viewarticle&artid=196&page=1

Link to MS Cognitive Problems and a link at the bottom of the article to help solve cognitive problems:
http://www.nationalmssociety.org/Brochures-MSMindMemory.asp

Stretching Exercises for people with MS:
http://www.nationalmssociety.org/pdf/Brochures/Stretching.pdf#search=%22stretching%20with%20helpe r%20for%20people%20with%20ms%22

Stretching Exercises with a Helper for people with MS:
http://www.nationalmssociety.org/pdf/Brochures/StretchingHelper.pdf#search=%22stretching%20with%2 0helper%20for%20people%20with%20ms%22

Managing Progressive MS:
http://www.nationalmssociety.org/Brochures-ManagingProg1.asp

Complications and Caregivers
http://www.nationalmssociety.org/Sourcebook-Advanced%20MS.asp

Kurtzke Scale:
http://www.mult-sclerosis.org/expandeddisabilitystatusscale.html

Living Will:
http://www.nationalmssociety.org/MedicalDirectives.asp

National MS Society's Scholarship Site:
http://www.nationalmssociety.org/scholarship_menu.asp

Jooly's Joint (to e-mail others with MS or to put information about yourself for others to e-mail you. Has a link for caregivers to e-mail one another and also a link for gays and lesbians with MS to e-mail one another.)
http://www.mswebpals.org/

NARCOMS:
http://www.mscare.org/cmsc/CMSC-NARCOMS-Information.html

Talks about MS; click on Lectures:
http://library.med.utah.edu/kw/ms/

BBS1951

10-05-2006, 07:58 PM

And one of my favorites::cool:

www.multiplesclerosissucks.com

firemonkey

11-18-2006, 03:54 PM

http://www.doaj.org/

mcfox

01-12-2007, 04:36 PM

A new resource that some folks may be interested in:
www.mswiki.org

squiffy2

03-09-2007, 02:08 PM

Can I add three links?

The Multiple Sclerosis Resource Centre - http://www.msrc.co.uk

The MSRC Discussion Boards - http://p198.ezboard.com/bmsrcsharing

Squiffys House Of Fun - Laughter For Multiple Sclerosis - http://www.shof.msrcsites.co.uk/

squiffs:)

0357

05-17-2007, 01:46 AM

Medical Directives:
http://www.nationalmssociety.org/site/PageServer?pagename=HOM_LIVE_medicaldirectives

Sorry I have to keep posting; I do not like the fact that we cannot edit our posts and keep our links up-to-date.

0357

06-02-2007, 11:19 PM

For those without insurance: (through drug companies)

Rx Council
1-866-794-3571

Call Rx Council and tell them what drug(s) you need and they will tell you who to get in touch with. It is for the lower income. Call and leave a message if you must and they will call you back. Very low co-pays. You need a year's prescription with 3 refills.

moose53

07-30-2007, 01:14 AM

http://retiredwaif.com

Barb

postmaster1992

11-06-2007, 02:26 PM

Hi and thanks so much for all of the info links and sites.:D I did find one with lots and lots of info about the neuro testing and nerves and such...:winky::cool:
www.merck.com I know it is a med one I think, however tons of info.
Be Well
Geri

lady_express_44

02-11-2008, 01:06 PM

All about MS brain and spinal lesions:

http://www.radiologyassistant.nl/en/4556dea65db62

Demyelinating Diseases of the Brain:

http://spinwarp.ucsd.edu/NeuroWeb/Text/br-840.htm

What they are looking for to dx MS, and large list of differential diagnosis' for MS:

http://www.neurology.wisc.edu/publications/07_pubs/Neuro_2.pdf

Cherie

Av8rgirl

03-15-2008, 04:27 PM

Here's a link for current clincial trials involving MS. Some are in the recruiting stage, some are completed. If you are interested in becoming a "lab rat," here's your opportunity to contribute to the MS Community! Go take a look...there are almost 100 clinical trials, either ongoing to in progress right now!

http://clinicaltrials.gov/ct2/results?term=multiple+sclerosis&pg=1

sassy

05-02-2008, 12:43 PM

Did anyone else know that NMSS has a MySpace page? I didn't!

www.myspace.com/MSsociety

mom23angels

05-23-2008, 09:48 PM

I stumbled across a Mega-list for MS resources that I don't think has been added (then again my cognition isn't too hot lately!).

http://www.acelink.net/Users/MrRockyDog/Resources.htm

Monique

Bearygood

08-18-2008, 10:45 PM

0357

09-06-2008, 01:09 PM

Wanted to pass along a phone number should you be without prescriptions...1-866-728-4368--Bridges to Access. They will direct you to the drug company that carries the drug you need. For all drugs you order a 3 month supply.

If you need Wellbutrin, call 1-866-728-4368.

Baclofen, Klonopin & Xanax and a number of other drugs comes from Rx Outreach if I remember correctly; but most importantly it includes the middle income people. 1-800-769-3880.

You can even have Part D coverage which doesn't cover Xanax or Klonopin and get these drugs if your income allows; 1-800-769-3880.

Help from MS disease modifying drugs:

AVONEX: 1-800-456-2255

BETASERON: 1-877-836-5724

COPAXONE: 1-800-887-8100

NOVANTRONE: 1-877-447-3243

REBIF: 1-877-447-3243

TYSABRI: 1-800-456-2255

I have tried to post National MS Society's sites but they keep changing; the best I can recommend is go to their main site and use their search engine to find information you are looking for.

Av8rgirl

09-07-2008, 05:25 PM

SandyC

09-07-2008, 06:39 PM

This popped up in my mailbox tonight and I thought it would be worth posting. Here's a current list of worldwide clinical trials listed by location:

http://www.centerwatch.com/patient/studies/cat102.html

That site is pretty cool. I just signed up to get info when new spms trials are in my area. Thanks!

Abasaki

10-05-2008, 08:36 PM

Just wanted to share.... I haven't looked at everything on the below site but thought it was interesting so I'm sharing.

Montel Williams MS Foundation:
http://www.montelms.org/Grants (http://www.montelms.org/Grants)

Quite a bit of information on his site... I believe the links on his site are people/groups/researchers who have been given grants from the foundtation.

:hug:
Abbie

0357

12-30-2008, 10:31 AM

[FONT=Century Gothic][SIZE=3]Montel Williams MS Foundation: http://www.montelms.org/Grants

Montel Williams MS Phone Number which I 'believe' is for medications:
1-888-477-2669

0357

12-30-2008, 10:35 AM

MS Foundations:
http://www.imssf.org/ International MS Support Foundation

http://www.nmss.org/ National Multiple Sclerosis Society (1-800-344-4867)

http://www.msaa.com Multiple Sclerosis Association of America (MSAA) (1-800-833-4672)
Have free Cooling Vests; runs on the small side.

MS Service Society (412) 539-1090 or 800-542-2413 (Pittsburgh, PA and surrounding areas)
Offer in-home physical therapy; based on your income.

National MS Donors:
1-800-292-9537

Kitty

12-30-2008, 03:07 PM

Interesting newsletter.....not sure how I got on the email list!

http://www.mscare.org/cmsc/Current-Issue.html

Kitty

07-21-2009, 02:39 PM

http://www.mscare.org/cmsc/Clinical-Trials/

blue18

07-22-2009, 07:41 PM

Here's a great video on MS breakthrough

blue18

07-22-2009, 07:43 PM

The link wouldn't post, but it's on google: MS Breakthrough?
February 10, 2009 2:31 PM

Edwin McClure contracted Multiple Sclerosis as a high school senior but after undergoing new stem cell treatments, his family says he is "cured." Debbye Turner Bell reports.

0357

10-26-2009, 02:21 PM

Call 888-477-2669 Partnership for Prescription Access. They will direct you to the proper drug company that carries the drug you are prescribed.

If you need Wellbutrin, call 1-866-728-4368.

Baclofen, Klonopin & Xanax and a number of other drugs comes from Rx Outreach; but most importantly it includes the middle income people. 1-800-769-3880.

You can even have Part D coverage which doesn't cover Xanax or Klonopin and get these drugs if your income allows; 1-800-769-3880.

Help from MS disease modifying drugs:

AVONEX: 1-800-456-2255

BETASERON: 1-877-836-5724

COPAXONE: 1-800-887-8100

NOVANTRONE: 1-877-447-3243

REBIF: 1-877-447-3243

TYSABRI: 1-800-456-2255

I have tried to post National MS Society's sites but they keep changing; the best I can recommend is go to their main site and use their search engine to find information you are looking for.