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Thread: Useful Websites (posted by David Hosobuchi, 10/2006--Updated 1/2018)

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    Default Useful Websites (posted by David Hosobuchi, 10/2006--Updated 1/2018)

    Here is the link to the complete thread on the old board:

    http://www.braintalkcommunities.org/...ead.php?t=1742

    MS Organizations


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

    2. Multiple Sclerosis Association of America (MSAA)
    https://mymsaa.org
    1-800-532-7667

    3. MS Foundation
    http://www.msfocus.org/
    1-888-673-6287

    4. MS Society - UK
    http://www.mssociety.org.uk/

    5. Multiple Sclerosis International Federation
    https://www.msif.org



    MRI



    1. http://www.imaginis.com/multiple-scl...s-in-the-brain

    2. Whole Brain Atlas:
    http://www.med.harvard.edu/AANLIB/home.html

    3. "How MRI Works:
    http://www.howstuffworks.com/mri.htm

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

    Information about MS



    1.
    Myelin Repair Foundation
    www.myelinrepair.org

    The Myelin Repair Foundation is a California-based non-profit medical research foundation dedicated to accelerating basic medical research into myelin repair treatments that will dramatically improve the lives of people suffering from multiple sclerosis.


    The Myelin Repair Foundation was created by Scott Johnson, an experienced biotechnology CEO who was diagnosed with MS in 1976. At that time Scott’s physician told him there would be a cure in 30-50 years. If Scott were diagnosed today, he would be told the same thing. With the billions of government and non-profit dollars spent on basic medical research each year, Scott wondered, “Where are the cures?

    His solution is the Accelerated Research Collaboration model, whereby the Myelin Repair Foundation has forged partnership agreements among medical researchers at Stanford University, the University of Chicago, Northwestern University and Case Western Reserve University. Under those agreements, leading researchers are sharing data and working together to accelerate studies that could lead to a cure for MS – and inevitably breakthroughs that arise for other autoimmune diseases.

    The Accelerated Research Collaboration model is cutting in half the time to make basic scientific discoveries and shepherding those discovers into commercial development. Scott’s entrepreneurial quest for a cure for MS has been recognized in the The Wall Street Journal, BusinessWeek and Scientific American. Further, more than 60 different disease research organizations have expressed an interest in the model and how it might be used to leverage their own research investments and bring treatments to patients who can’t afford to wait.

    Justine Lam
    Internet Strategist
    Myelin Repair Foundation
    2. Cambridge University's Centre for Myelin Repair:

    https://www.mssociety.org.uk/cambrid...-myelin-repair

    A 2010 article about it:

    http://www.bbc.com/news/health-11913689

    3. Medical News Today - Multiple Sclerosis News:
    http://www.medicalnewstoday.com/sect...ple_sclerosis/

    4. Spasticity:

    http://www.emedicine.com/PMR/topic177.htm

    5. NARCOMS (North American Research Committee on Multiple Sclerosis) - a global MS registry
    • NARCOMS is a non profit project of the Consortium of Multiple Sclerosis Centers and is supported by grants and in-kind services from:
      • United Spinal Association,
      • Paralyzed Veterans Association (PVA), and the
      • National Multiple Sclerosis Society.
      • Additional support has been provided by unrestricted grants from the following pharmaceutical companies: Berlex, Biogen, Immunex, Serono, and Teva Neuroscience.

    [from the NARCOMS Website]

    http://narcoms.org/

    6. Kurtzke Disability Scale:

    https://www.mstrust.org.uk/a-z/expan...tus-scale-edss

    7. Possible link between Chlamydia pneumoniae and MS:

    http://www.cpnhelp.org

    8. Clinical trials

    http://www.clinicaltrials.gov/ct2/re...iple+sclerosis

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

    9. Frequent updates with news about MS:

    http://www.msviews.org/msviewsandnews4/

    10. http://www.ncbi.nlm.nih.gov/

    If you register on this US National Library of Medicine site you can sign up for regular e-mails containing abstracts of the most recent research on MS (or any other topics you choose).

    11. General medical information:

    http://www.medicinenet.com/script/main/hp.asp

    http://www.mayoclinic.com/

    http://www.webmd.com/

    http://www.wellnessletter.com/

    12. https://www.iconquerms.org/ - A research group. As a member you fill out periodic questionnaires with 6-month updates so you and the researchers can use the de-identified data about use of various MS treatments, exercise, diet, supplements, etc.

    Treatments


    INJECTABLE DISEASE-MODIFYING DRUGS:

    Avonex (interferon beta-1a)
    https://www.avonex.com/

    Betaseron / Betaferon (interferon beta-1b) = Extavia
    https://www.betaseron.com/

    Copaxone (glatiramer acetate) = Glatopa
    https://www.copaxone.com

    --also available in generic form as glatiramer acetate 40 mg or 20 mg through Mylan
    https://www.glatirameracetate.com/en/patient-support

    Extavia = Betaseron
    https://www.extavia.com/index.jsp

    Glatopa = Copaxone (glatiramer acetate)
    https://www.glatopa.com/

    Plegridy (pegylated interferon beta-1a)
    https://www.plegridy.com/

    Rebif (interferon beta-1a)
    https://www.rebif.com/index

    Zinbryta (daclizumab)
    https://www.zinbryta.com/

    INFUSED DISEASE-MODIFYING DRUGS:

    Lemtrada (alemtuzumab)
    https://www.lemtrada.com/

    Novantrone
    (mitoxantrone) (no official Website available)
    https://www.nationalmssociety.org/Tr...ons/Novantrone

    Ocrevus (ocrelizumab)
    https://www.ocrevus.com/

    Sometimes Rituxan (rituximab), a near-equivalent of ocrelizumab, is prescribed for off-label use:
    http://www.rituxan.com/

    Tysabri (natalizumab)
    http://www.tysabri.com

    ORAL DISEASE-MODIFYING DRUGS:

    Aubagio (teriflunomide)
    https://www.aubagio.com/

    Gilenya (fingolimod)
    http://www.gilenya.com/index.jsp

    Tecfidera (dimethyl fumarate)
    https://www.tecfidera.com/

    TREATMENT OF RELAPSES:

    IVMP (Methylprednisolone)

    High-dose oral prednisone

    ACTH (intramuscular adrenocorticotrophic hormone)

    Plasmapheresis

    IVIG (intravenous immunoglobulin)


    TREATMENT OF SYMPTOMS:

    There are too many treatments of various symptoms to list but one that has been attracting considerable attention recently has been Ampyra, which seems effective in improving walking in some people with MS.

    Ampyra (dalfampridine)
    https://ampyra.com/

    ALTERNATIVE MS TREATMENTS:

    LDN (low-dose naltrexone)

    http://www.lowdosenaltrexone.org/
    https://www.ldnscience.org/

    MARIJUANA (cannabis)

    Two articles about medical marijuana for MS--one from the National MS Society, one by Dean M. Wingerchuk, MD, of the Mayo Clinic:
    https://www.nationalmssociety.org/Tr...ines/Marijuana
    https://www.mayoclinic.org/diseases-...s/faq-20112500

    A BrainTalk administrator has set up a forum about marijuana for a large variety of medical conditions:
    https://cannatalks.com/


    Assistive Devices



    1. http://usatechguide.org/techguide.php [United Spinal Association's guide to an extensive variety of aids]

    2. http://www.newmobility.com/

    3. http://www.wheelchairjunkie.com

    4. Scooters

    http://www.scooterlink.com
    http://www.spinlife.com
    http://www.blvd.com/Scooters_and_Scooter_Lifts/Ramps/
    http://www.enablemart.com

    5. Other handicap supplies:

    http://www.healthcraftproducts.com

    https://liveoakmed.com/

    6. Ramps:

    http://www.discountramps.com/

    7. Cooling Aids:

    http://www.polarproducts.com/polarshop/pc/home.asp

    http://www.heatreliefdepot.com/

    http://www.stacoolvest.com/

    http://steelevest.com/

    http://bodycooler.com.au

    http://glaciertek.com

    http://texascoolvest.com

    https://www.one-eighteen.com [cooling mattresses]

    http://mistymate.com [pump mister]

    The MSAA offers free cooling equipment to persons with MS who qualify. To find out more, go to:

    https://mymsaa.org/msaa-help/cooling-products/

    The MS Foundation provides cooling aids in a program that runs from February 1 to June 1:

    https://msfocus.org/Get-Help/MSF-Pro...ooling-Program

    8. Personal emergency response systems

    This 2014 article in Consumer Reports lists these and gives ratings:

    https://www.consumerreports.org/cro/...stem/index.htm


    Assistance



    1. Exercise:

    Stretching exercises without assistance:

    https://www.nationalmssociety.org/Na...ted-Manual.pdf

    Stretching exercises with assistance:

    https://www.nationalmssociety.org/Na...h-a-Helper.pdf

    2. Finding doctors (also contains a Canadian list):

    http://patients.aan.com/findaneurologist/

    3. Disabled parents:

    http://lookingglass.org/index.php

    4. Drug assistance programs:

    http://www.pparx.org
    http://www.rarediseases.org
    http://www.themedicineprogram.com
    http://www.needymeds.org/
    https://www.panfoundation.org/
    https://www.scbn.org/

    http://www.patientadvocate.org/
    This is a fantastic organization that has helped me tremendously. I am also diabetic and the diabetic insulins are extremely expensive. They have arranged for Levemir and Novolog for me at little cost. When you go to their website it will say that they don’t cover people on Medicare but they do. They cover people with Medicare and private insurance. Fill out the paperwork and they will call you. Or you can call them at 1-866-722-6479. They work as a go-between with the drug manufacturers. They charge $50 per month for the first prescription and $15.00 for every prescription thereafter indefinitely.
    --posted by JTwin, 10/2/15

    https://www.medicare.gov/part-d/index.html
    There's a web tool that will help you determine if a Prescription Assistance Program (PAP) could help you with the expenses you incur for drugs when the Medicare part D "doughnut hole" kicks in and isn't covering drugs. Click "Drug Coverage (Part D) at the top, then click "Costs for Medicare drug coverage", from the drop-down menu.
    --posted by 'Lissa, 6/07

    Chronic Disease Fund

    https://www.mygooddays.org/
    https://www.benefitscheckup.org/

    5. Chronic illness--general support

    https://www.nytimes.com/2018/01/10/o...r-meaning.html (a New York Times article by a rabbi diagnosed with central nervous system lupus, entitled "In My Chronic Illness I Found a Deeper Meaning")

    6. Travel assistance for the disabled:

    https://www.disabled-world.com/travel/

    https://www.vantagemobility.com/blog...e-applications (Accessible parking and other mobile apps for daily use)


    Special thanks to everyone who contributed to this thread, especially David Hosobuchi, Mike Weins, Moderator #7, BBS1951, Cherie, Frog42, the late JTwin (Joy), 'Lissa, mmcc53, Salpalsally (Sally), and 0357. Please let me know by PM if there are any changes you think should be made.
    Last edited by Moderator #7; 01-26-2018 at 08:10 PM.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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