Here is the link to the complete thread on the old board:
Only registered and activated users can see links., Click Here To Register...
1. National Multiple Sclerosis Society (NMSS) Only registered and activated users can see links., Click Here To Register...1-800-344-4867
2. Multiple Sclerosis Association of America (MSAA)
Only registered and activated users can see links., Click Here To Register...
1-800-532-7667
3. MS Foundation
Only registered and activated users can see links., Click Here To Register...
1-888-673-6287
4. MS Society - UK
Only registered and activated users can see links., Click Here To Register...
5. Multiple Sclerosis International Federation
Only registered and activated users can see links., Click Here To Register...
1. Only registered and activated users can see links., Click Here To Register...
2. Whole Brain Atlas:
Only registered and activated users can see links., Click Here To Register...
3. "How MRI Works:
Only registered and activated users can see links., Click Here To Register...
4. Only registered and activated users can see links., Click Here To Register...
1.
2. Cambridge University's Centre for Myelin Repair:
Only registered and activated users can see links., Click Here To Register...
A 2010 article about it:
Only registered and activated users can see links., Click Here To Register...
3. Medical News Today - Multiple Sclerosis News:
Only registered and activated users can see links., Click Here To Register...
4. Spasticity:
Only registered and activated users can see links., Click Here To Register...
5. NARCOMS (North American Research Committee on Multiple Sclerosis) - a global MS registry
[from the NARCOMS Website]
Only registered and activated users can see links., Click Here To Register...
6. Kurtzke Disability Scale:
Only registered and activated users can see links., Click Here To Register...
7. Possible link between Chlamydia pneumoniae and MS:
Only registered and activated users can see links., Click Here To Register...
8. Clinical trials
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
9. Frequent updates with news about MS:
Only registered and activated users can see links., Click Here To Register...
10. Only registered and activated users can see links., Click Here To Register...
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:
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
12. Only registered and activated users can see links., Click Here To Register... - 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.
INJECTABLE DISEASE-MODIFYING DRUGS:
Avonex (interferon beta-1a)
Only registered and activated users can see links., Click Here To Register...
Betaseron / Betaferon (interferon beta-1b) = Extavia
Only registered and activated users can see links., Click Here To Register...
Copaxone (glatiramer acetate) = Glatopa
Only registered and activated users can see links., Click Here To Register...
--also available in generic form as glatiramer acetate 40 mg or 20 mg through Mylan
Only registered and activated users can see links., Click Here To Register...
Extavia = Betaseron
Only registered and activated users can see links., Click Here To Register...
Glatopa = Copaxone (glatiramer acetate)
Only registered and activated users can see links., Click Here To Register...
Plegridy (pegylated interferon beta-1a)
Only registered and activated users can see links., Click Here To Register...
Rebif (interferon beta-1a)
Only registered and activated users can see links., Click Here To Register...
Zinbryta (daclizumab)
Only registered and activated users can see links., Click Here To Register...
INFUSED DISEASE-MODIFYING DRUGS:
Lemtrada (alemtuzumab)
Only registered and activated users can see links., Click Here To Register...
Novantrone (mitoxantrone) (no official Website available)
Only registered and activated users can see links., Click Here To Register...
Ocrevus (ocrelizumab)
Only registered and activated users can see links., Click Here To Register...
Sometimes Rituxan (rituximab), a near-equivalent of ocrelizumab, is prescribed for off-label use:
Only registered and activated users can see links., Click Here To Register...
Tysabri (natalizumab)
Only registered and activated users can see links., Click Here To Register...
ORAL DISEASE-MODIFYING DRUGS:
Aubagio (teriflunomide)
Only registered and activated users can see links., Click Here To Register...
Gilenya (fingolimod)
Only registered and activated users can see links., Click Here To Register...
Tecfidera (dimethyl fumarate)
Only registered and activated users can see links., Click Here To Register...
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)
Only registered and activated users can see links., Click Here To Register...
ALTERNATIVE MS TREATMENTS:
LDN (low-dose naltrexone)
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
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:
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
A BrainTalk administrator has set up a forum about marijuana for a large variety of medical conditions:
Only registered and activated users can see links., Click Here To Register...
1. Only registered and activated users can see links., Click Here To Register... [United Spinal Association's guide to an extensive variety of aids]
2. Only registered and activated users can see links., Click Here To Register...
3. Only registered and activated users can see links., Click Here To Register...
4. Scooters
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
5. Other handicap supplies:
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
6. Ramps:
Only registered and activated users can see links., Click Here To Register...
7. Cooling Aids:
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register... [cooling mattresses]
Only registered and activated users can see links., Click Here To Register... [pump mister]
The MSAA offers free cooling equipment to persons with MS who qualify. To find out more, go to:
Only registered and activated users can see links., Click Here To Register...
The MS Foundation provides cooling aids in a program that runs from February 1 to June 1:
Only registered and activated users can see links., Click Here To Register...
8. Personal emergency response systems
This 2014 article in Consumer Reports lists these and gives ratings:
Only registered and activated users can see links., Click Here To Register...
1. Exercise:
Stretching exercises without assistance:
Only registered and activated users can see links., Click Here To Register...
Stretching exercises with assistance:
Only registered and activated users can see links., Click Here To Register...
2. Finding doctors (also contains a Canadian list):
Only registered and activated users can see links., Click Here To Register...
3. Disabled parents:
Only registered and activated users can see links., Click Here To Register...
4. Drug assistance programs:
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
--posted by JTwin, 10/2/15
Only registered and activated users can see links., Click Here To Register...
--posted by 'Lissa, 6/07
Chronic Disease Fund
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
5. Chronic illness--general support
Only registered and activated users can see links., Click Here To Register... (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:
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register... (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.
Only registered and activated users can see links., Click Here To Register...
MS Organizations
1. National Multiple Sclerosis Society (NMSS) Only registered and activated users can see links., Click Here To Register...1-800-344-4867
2. Multiple Sclerosis Association of America (MSAA)
Only registered and activated users can see links., Click Here To Register...
1-800-532-7667
3. MS Foundation
Only registered and activated users can see links., Click Here To Register...
1-888-673-6287
4. MS Society - UK
Only registered and activated users can see links., Click Here To Register...
5. Multiple Sclerosis International Federation
Only registered and activated users can see links., Click Here To Register...
MRI
1. Only registered and activated users can see links., Click Here To Register...
2. Whole Brain Atlas:
Only registered and activated users can see links., Click Here To Register...
3. "How MRI Works:
Only registered and activated users can see links., Click Here To Register...
4. Only registered and activated users can see links., Click Here To Register...
Information about MS
1.
Myelin Repair Foundation
Only registered and activated users can see links., Click Here To Register...
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
Only registered and activated users can see links., Click Here To Register...
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
Only registered and activated users can see links., Click Here To Register...
A 2010 article about it:
Only registered and activated users can see links., Click Here To Register...
3. Medical News Today - Multiple Sclerosis News:
Only registered and activated users can see links., Click Here To Register...
4. Spasticity:
Only registered and activated users can see links., Click Here To Register...
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.
Only registered and activated users can see links., Click Here To Register...
6. Kurtzke Disability Scale:
Only registered and activated users can see links., Click Here To Register...
7. Possible link between Chlamydia pneumoniae and MS:
Only registered and activated users can see links., Click Here To Register...
8. Clinical trials
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
9. Frequent updates with news about MS:
Only registered and activated users can see links., Click Here To Register...
10. Only registered and activated users can see links., Click Here To Register...
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:
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
12. Only registered and activated users can see links., Click Here To Register... - 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)
Only registered and activated users can see links., Click Here To Register...
Betaseron / Betaferon (interferon beta-1b) = Extavia
Only registered and activated users can see links., Click Here To Register...
Copaxone (glatiramer acetate) = Glatopa
Only registered and activated users can see links., Click Here To Register...
--also available in generic form as glatiramer acetate 40 mg or 20 mg through Mylan
Only registered and activated users can see links., Click Here To Register...
Extavia = Betaseron
Only registered and activated users can see links., Click Here To Register...
Glatopa = Copaxone (glatiramer acetate)
Only registered and activated users can see links., Click Here To Register...
Plegridy (pegylated interferon beta-1a)
Only registered and activated users can see links., Click Here To Register...
Rebif (interferon beta-1a)
Only registered and activated users can see links., Click Here To Register...
Zinbryta (daclizumab)
Only registered and activated users can see links., Click Here To Register...
INFUSED DISEASE-MODIFYING DRUGS:
Lemtrada (alemtuzumab)
Only registered and activated users can see links., Click Here To Register...
Novantrone (mitoxantrone) (no official Website available)
Only registered and activated users can see links., Click Here To Register...
Ocrevus (ocrelizumab)
Only registered and activated users can see links., Click Here To Register...
Sometimes Rituxan (rituximab), a near-equivalent of ocrelizumab, is prescribed for off-label use:
Only registered and activated users can see links., Click Here To Register...
Tysabri (natalizumab)
Only registered and activated users can see links., Click Here To Register...
ORAL DISEASE-MODIFYING DRUGS:
Aubagio (teriflunomide)
Only registered and activated users can see links., Click Here To Register...
Gilenya (fingolimod)
Only registered and activated users can see links., Click Here To Register...
Tecfidera (dimethyl fumarate)
Only registered and activated users can see links., Click Here To Register...
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)
Only registered and activated users can see links., Click Here To Register...
ALTERNATIVE MS TREATMENTS:
LDN (low-dose naltrexone)
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
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:
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
A BrainTalk administrator has set up a forum about marijuana for a large variety of medical conditions:
Only registered and activated users can see links., Click Here To Register...
Assistive Devices
1. Only registered and activated users can see links., Click Here To Register... [United Spinal Association's guide to an extensive variety of aids]
2. Only registered and activated users can see links., Click Here To Register...
3. Only registered and activated users can see links., Click Here To Register...
4. Scooters
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
5. Other handicap supplies:
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
6. Ramps:
Only registered and activated users can see links., Click Here To Register...
7. Cooling Aids:
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register... [cooling mattresses]
Only registered and activated users can see links., Click Here To Register... [pump mister]
The MSAA offers free cooling equipment to persons with MS who qualify. To find out more, go to:
Only registered and activated users can see links., Click Here To Register...
The MS Foundation provides cooling aids in a program that runs from February 1 to June 1:
Only registered and activated users can see links., Click Here To Register...
8. Personal emergency response systems
This 2014 article in Consumer Reports lists these and gives ratings:
Only registered and activated users can see links., Click Here To Register...
Assistance
1. Exercise:
Stretching exercises without assistance:
Only registered and activated users can see links., Click Here To Register...
Stretching exercises with assistance:
Only registered and activated users can see links., Click Here To Register...
2. Finding doctors (also contains a Canadian list):
Only registered and activated users can see links., Click Here To Register...
3. Disabled parents:
Only registered and activated users can see links., Click Here To Register...
4. Drug assistance programs:
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
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.
Only registered and activated users can see links., Click Here To Register...
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.
Chronic Disease Fund
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register...
5. Chronic illness--general support
Only registered and activated users can see links., Click Here To Register... (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:
Only registered and activated users can see links., Click Here To Register...
Only registered and activated users can see links., Click Here To Register... (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.
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