Resources, Useful Websites & Clinical Trials
 

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.h...le%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/m...sclerosis.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/...?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/...search+Classes


News - TopAbstracts in Multiple Sclerosis 07/17/2003
http://www.docguide.com/news/content...5DAFA4&abd=yes

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

[B]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

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/con...ct/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/cndsi...info/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/b...ies--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/askado..._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/Visual...dResponse.html
http://www.direct-ms.org/
Encyclopedia of MS Terms and definitions

http://www.veritasmedicine.com/trial...pg=1&cid=72576
http://www.veritasmedicine.com/
Clinical trials for MS info

http://www.abstracts-on-line.com/abs...um=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

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.

Think you have MS? What conditions look like MS?

The Differential Diagnosis in MS:

http://jnnp.bmjjournals.com/cgi/cont...71/suppl_2/ii9

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.

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

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.

MS Links
 

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/Bro...-EnEspanol.asp

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

US MS Clinics:
http://www.nationalmssociety.org/Tre...0Locations.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/modul...rtid=61&page=1
http://www.nationalmssociety.org/Med...%20in%20MS.asp

Brochure about Bladder Problems and MS:
http://www.nationalmssociety.org/Bro...lling%20Bl.asp

Article about MS Fatigue:
http://www.jsumption.com/imssf/modul...tid=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/Bro...MindMemory.asp

Stretching Exercises for people with MS:
http://www.nationalmssociety.org/pdf...20with%20ms%22

Stretching Exercises with a Helper for people with MS:
http://www.nationalmssociety.org/pdf...20with%20ms%22

Managing Progressive MS:
http://www.nationalmssociety.org/Bro...agingProg1.asp

Complications and Caregivers
http://www.nationalmssociety.org/Sou...anced%20MS.asp

Kurtzke Scale:
http://www.mult-sclerosis.org/expand...atusscale.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-NARC...formation.html

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

And one of my favorites::cool:

www.multiplesclerosissucks.com

Directory of open access journals
 

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

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:)

Medical Directives
 

Medical Directives:
http://www.nationalmssociety.org/sit...icaldirectives

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.

Low Cost Drug for those without Insurance
 

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.

An MSer and a Brand-New Mom -- It CAN Be Done!!
 

http://retiredwaif.com

Barb

ms info
 

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

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/public...07/Neuro_2.pdf


Cherie

Current Clinical Trials for MS
 

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/result...sclerosis&pg=1

NMSS MySpace
 

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

www.myspace.com/MSsociety

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

Current Clinical Trials by State/Country
 

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

Just an FYI - the NMSS site is undergoing some changes. Many people have requested of the webmaster that redirects (either temporary or permanent) be attached to the some of the more popular links. It is being looked at so these types of issues won't keep occurring. It is a problem and they are aware of it!

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

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

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

MS Links & Phone Numbers
 

Clinical Trials
 

MS Breakthrough
 

Here's a great video on MS breakthrough

MS Breakthrough
 

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.

If you have No Prescription Coverage...
 

Explaining MS to children:
 

If you have small children, or grandchildren, and have been looking for an easy way to explain MS to them, try this website from The National MS Society. It's interactive and has been formulated especially for the little ones.

Keep S'myelin: A Fun Resource for Kids about MS

http://main.nationalmssociety.org/KS...ue1/index.html

Resources, Useful Websites & Clinical Trials
 

I inquired about possible assistance from the NMSS for medical equipment and received this very helpful email. It has lots of assistance options and links with valuable information. I wanted to share it here so others could take advantage of the help offered. Here it is:

There are a variety of resources that might be able to help fund a piece of assistive technology or durable medical equipment, like a rollator. I have included information about the process and possible funding sources in the email below in addition to including information about our financial assistance application.

PROCESS:

Please see these articles for some basic information about theprocess:

Finding the Right Stair Lift, Ramp, and Wheelchair : National MS Society

Affording Stair Lifts, Ramps, and Wheelchairs : National MS Society


POTENTIAL FUNDING RESOURCES:

NATIONAL MS SOCIETY’S FINANCIAL ASSISTANCE PROGRAM:

The National MS Society has a limited financial assistance program that can be used for an MS-related expense, like assistive technology or durable medical equipment. We ask that you access your health insurance and community resources first, but please feel free to apply to our program if you need assistance. I have attached our cover letter and application above. Note: you will want to return the completed application to the contact information listed on the cover letter. Do not return it to me, as I am in a different office.


COMMUNITY RESOURCES:

Here is information about four organizations that are often able to help:

Multiple Sclerosis Foundation (MSF)
6520 N. Andrews Avenue
Fort Lauderdale, FL 33309
Phone: 888-673-6287
Fax: 954-351-0630
Email: support@msfocus.org
Website: http://www.msfocus.org/

Eligibility:
Persons with MS who have need for financial assistance for equipment or services. An application is required for most of MSF’s grant programs.
Services Information:
The MSF offers the following financial assistance programs:

• Assistive Technology Program: http://www.msfocus.org/Assistive-Tec...y-Program.aspx
  • This program links individuals with MS to a wide range of devices that allow them to function more independently in activities of daily living.
  • MSF may provide, locate, or help with funding for needed AT device.
  • See website for examples of eligible devices.
• Brighter Tomorrow Grant: http://www.msfocus.org/Brighter-Tomorrow-Grant.aspx
  • Applications/essays are accepted July 1 – September 1 each year.
  • Application must be submitted with an essay from the applicant. (See website for details.)
  • Grant of up to $1000 for items like ramps, wheelchairs, walkers, eyeglasses, home modifications

MS Association of America:
706 Haddonfield Road
Cherry Hill, NJ 08002
Phone: 800-532-7667
Fax: 856-661-9797
Email: msaa@msassociation.org
Website: http://msassociation.org/
Eligibility:
Persons with MS who need financial assistance for cooling vests, MRI exams and
personal use equipment. Also serves people who need an initial MRI to establish a
diagnosis of MS. An application is required for each MSAA grant program.
Services Information:
The MSAA offers the following financial assistance programs:

• MSAA Equipment Distribution Program: http://www.msassociation.org/programs/equipment/
  • Program provides each applicant with up to 3 free products designed to improve their safety, dignity, mobility and independence.
  • Applications are accepted throughout the year. (See website for details.)
  • Applicant must submit an Equipment Distribution Program Application along with a note from the treating doctor confirming the applicant’s MS diagnosis.
  • Items distributed through the program include a variety of bathroom & home safety products such as shower chairs, grab bars and hand rails as well as mobility devices including canes, walkers and wheelchairs.
  • See application for descriptions of equipment offered.

Friends of Man
P.O. Box 937
Littleton, CO 80160
Phone: 303-798-2342
Website: http://friendsofman.org/

Eligibility:
Applications are accepted from U.S. residents and must be submitted by an agency on behalf of the individual. Rent, utilities, deposits, past due bills and reimbursement are not eligible requests for this program.

Services:

• Serves persons in need of financial assistance for temporary childcare, durable medical equipment, eyeglasses, hearing aids, dental needs (including dentures), prostheses, medicine, and more.
• All requests are considered on a case-by-case basis.

ModestNeeds.Org
115 E 30th Street, FL1
New York, NY 10016
Phone: 212-463-7042
Website: http://www.modestneeds.org/help/grants/

Eligibility:
§ At least 18 years of age
§ Legal resident of the United States or Canada
§ Intend to apply for assistance either for yourself, or for a person living in your home
§ Household has at least one active bank account
§ Have regular access to a computer and the Internet and can check your email the Modest Needs website daily for the entire time that your application is active;
§ Have the ability to access either a scanner or a fax machine at my home, my place of business, or a shop like FedEx Business or Office Max for long enough to send the documentation that Modest Needs will request from me during the grant application process to Modest Needs' office for evaluation; and, if you rent (rather than own your residence)
§ Household has a legal lease that my landlord and a member of your household both have signed. This lease shows the monthly cost of your apartment, whether or not you pay all of this amount.

Services Information:
Offers the following types of grants:

• Self-Sufficiency Grants
• New Employment Grants
• Independent Living Grants
• Bridge Grants

I hope this information is helpful. If you have any other questions or concerns, please do feel free to contact us by phone at 1-800-344-4867 or by email at contactusnmss@nmss.org to have an MS Navigator assist you.

To help pay for medications
 

Some of this is a repeat:

Here are some companies that might be useful to help pay for medications:
Montel Williams MS Foundation: (888) 324-2773
Partnership For Prescription Assistance: (888) 477-2669
Wellness 2 Wellness: (866) 317-2775
Together RX Access: (800) 444-4106
The Commonwealth Fund: (212) 606-3800
The Medicine Program: (800) 921-0072
NeedyMeds: (978) 865-4115
National Organization of Rare Disorders (NORD): (203) 744-0100
Rx Council: (866) 794-3571
Alternative Funding Group: (866) 426-2906
Patient Access Network: (866) 316-7261
Bridges to Access: (866) 728-4368
Rx Outreach: (800) 769-3880
Look above in this thread for the phone numbers to the DMDs' patient assistance programs.

New info on JC virus
 

I just saw my neurologist today (every 6 months since I'm on Tysabri). He is at a big medical school and does research as well. He has been reading research on copper and zinc deficiencies which are associated with demyelinating disorders.

He and the NIH are doing research on the JCV antibody test. They used to think the false negative rate was 2.5 %. Now it could be more like 10-12%. In other words, some people who were negative are becoming positive (he didn't say how many cases). They are trying to figure out why this is happening. He's now adding a PCR test for the virus with every infusion (I get them every 8 weeks) which looks for JC virus DNA in your blood. It's a way, on an offhand chance, to pick up the virus in your body if you have a false negative situation going on.

They also think the problem might be there is more than one strain of JC virus so the assay test might not be picking up the strain you have, or maybe your body doesn't produce the antibodies in a great enough number to register on the assay (test). They think that maybe only one particular strain causes PML. He said it will take a year for them to sort all of this out.

He said this spring they refined the JCV antibody test so I will get the new one at my next infusion. I think it has been refined to catch some of the false negatives. I can't remember how exactly the test has been made better.

Thought I would share!

Great, informative site for both newbies and experienced MSers. Lots of information on this site and I recommend it to anyone seeking more info on MS.

http://my-ms.org/ms.htm

A good article about LPs, from Web MD.....
www.webmd.com/multiple-sclero...13_promo_1&mb=


And Evoked Potentials...

http://www.webmd.com/multiple-sclero...otential-tests

http://www.neurology.org/content/82/...t/P3.155.short

Study has been going approx. 1 year,

Pilot Trial Of Recombinant Human Growth Hormone For Remyelination In Multiple Sclerosis: Current Status And Preliminary Safety Analysis (P3.155)

Dr. Then Bergh has received personal compensation for activities with Biogen Idec, Novartis, Merck Serono, and Sanofi-Aventis Pharmaceuticals Inc. as a speaker or member of an advisory board. Dr. Then Bergh has received research support from Bayer Schering, Novartis and Teva Neuroscience.

In other words, every large Pharma is interested in the outcome of this one.. I am too.