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What Are the Best On-line Resources For Multiple Sclerosis? Information and Support

Updated on March 9, 2016
If you or someone you care about has MS, arm yourself with information about resources that are available.  Here are several to get you started.
If you or someone you care about has MS, arm yourself with information about resources that are available. Here are several to get you started. | Source

You Are Not Alone

Multiple Sclerosis is a chronic neurological disease that most often strikes adults in the prime of their lives — between ages 20 and 40 — when they are in the full swing of building careers and families. Women are affected four times as often as men.

MS is a degenerative illness that is autoimmune in nature, meaning the body mistakenly attacks itself. There is no cure yet. However, that doesn't mean there is no hope.

When I was diagnosed with MS in 2003, I felt alone, confused, and overwhelmed. I needed to learn more about this lifelong illness and understand what I could do to help myself. I needed to know how to talk to my preschooler about MS in a way she could understand.

I also struggled with who else needed to know this new information, as I knew it could have important employment impacts in the future. Talking to a peer counselor could have helped, too, but I didn't know where to turn. Finally, I wanted to explore clinical research studies to help find a cure. I did not know where to start.

If you or someone you care about is affected by Multiple Sclerosis, here is a list of top-quality on-line resources. Each is run by a non-profit organization. This enhances the credibility of the information they provide. Such resources are a great place to start — or continue — your journey of self-empowerment.

What Is Multiple Sclerosis?

MS is a degenerative illness that is autoimmune in nature, meaning the body mistakenly attacks itself. There is no cure yet. However, that doesn't mean there is no hope.

The Bright Side: Priority Parking

MS was not the way I wanted to score a priority parking spot, but disabled parking does help when you have mobility issues.
MS was not the way I wanted to score a priority parking spot, but disabled parking does help when you have mobility issues. | Source

Arm Yourself With Information

Multiple Sclerosis For Dummies
Multiple Sclerosis For Dummies

A trusted, compassionate guide to living with MS.

 

1. Multiple Sclerosis Foundation

The Multiple Sclerosis Foundation www.msfocus.org is service-based, non-profit organization that helps people with MS maintain physical and psychological health by offering programs and support to safely keep them in their homes and maintain self-sufficiency.

The Foundation also heightens public awareness about MS through educational programs, and it supplies emotional support to those affected by MS. Although some of their programs are financial need-based or not available in all areas, services that are worth a closer look include:

  • regional support groups;
  • an Assistive Technology Program which provides education, assistance, and funding for devices that help with daily living (e.g., orthotics, mobility aids);
  • a Computer Grant Program offering refurbished desktop computers to financially needy people with MS; and
  • a Cooling Program that supplies income-qualified recipients with free cooling products to manage summer heat, including cooling vests, work collars, wrist bands and more.
  • Additionally, the Foundation offers a postage-paid lending library of MS-related CDs, DVDs, and books as well as
  • access to peer counseling at 1-888-MSFOCUS (673-6287). Individuals with MS can even arrange a periodic check-in via phone. The organization has a special program which connects male MS patients with a male peer counselor -- important because MS can feel very isolating, and the disease strikes females more than males.

Whether it's participating in an MS Society walk-a-thon or a bike ride or any another event, stay as active as you can if you have MS.
Whether it's participating in an MS Society walk-a-thon or a bike ride or any another event, stay as active as you can if you have MS. | Source

What Are Common and Uncommon Symptoms of MS (Multiple Sclerosis) ?

 
 
 
body pain, pain in back of the eyes
tremors in the hands, limbs, especially when making precise movements
blurred or double vision, poor color vision, or vision loss (optic neuritis)
pins and needles feeling, burning or tingling
sleeping difficulties
numbness and tingling or sharp stabbing pain in face
abnormal taste sensation or loss of taste
slurred, "weak" or impaired voice
anxiety or mood swings
sexual/erectile dysfunction
constipation
difficulty raising one's foot (foot drop)
difficulty swallowing
fatigue
difficulty thinking or processing quickly
heat intolerance
dizziness
vertigo
balance issues
weakness
bladder or bowel dysfunction
muscle cramping, spasms, paralysis & rigidity
coordination problems
inability to rapidly change motions
problems walking
depression
uncontrollable laughing and/or crying
MS symptoms vary substantially from patient to patient. NEVER assume the worst case scenario! Do your research by checking out some of these national MS organizations further. Whatever your symptoms, you'll discover you are NOT alone!
Connect with key resources that can answer your questions about living with this disease and provide you advice and practical solutions.
Connect with key resources that can answer your questions about living with this disease and provide you advice and practical solutions. | Source

Arm Yourself With Humor, Too

Awkward Bitch: My Life with MS
Awkward Bitch: My Life with MS

Who knew that chronic illness could be ... funny?!? You'll laugh as well as shed some tears with recognition in response to this author's account.

 

2. The Consortium of Multiple Sclerosis Centers and NARCOMS Registry

The Consortium's website www.mscare.org is aimed at increasing the number of MS health professionals and facilitating collaborative research. While its audience is primarily healthcare professionals, people with MS might use it to locate an MS center.

The Consortium is a collaborative collection of over 150 MS centers across North America. It is run by a non-profit foundation that encourages advancements in MS research, education, and patient care services.

It also seeks to improve the quality of life of people affected by MS. Its programs and initiatives are free from commercial influence and do not promote individual products, directly or indirectly (i.e., a specific MS medication).

Importantly, the Consortium also sponsors the NARCOMS Registry, a global database of over 36,0000 MS patients (www.narcoms.org). NARCOMS was established by the Consortium in 1993.

MS patients volunteer by signing up for the confidential registry and completing two on-line surveys a year regarding their MS symptoms, lifestyle factors, and the progression of their disease. The registry also provides recruitment notifications of clinical trials and other studies. Participation is voluntary.

My experience is that some of the survey questions can occasionally feel intrusive, so if this is the case for you, you can choose not to answer those questions.

MS: Looking Forward to A Life Without Needles

This art project represents what MS patients know well:  a life with too many needles.  Although there are now oral medications, be sure to thoroughly understand their side effects before you take them.
This art project represents what MS patients know well: a life with too many needles. Although there are now oral medications, be sure to thoroughly understand their side effects before you take them. | Source

3. National Multiple Sclerosis Society

One of the best-known resources is the National Multiple Sclerosis Society www.nationalmssociety.org. This site provides MS-related articles educating those affected by the disease. There is a special section for the newly diagnosed as well as a list of famous people affected by MS, so that you know you're not alone.

The Society also offers tips for living your best life with MS, research updates written for general audiences, and information on MS advocacy with public officials. The site makes available free recorded web-casts from medical professionals regarding a variety of MS-related topics. It also lists a comprehensive bibliography of books and other materials. Resources may be available for lending through your local MS chapter.

Of special interest to parents may be the site's Keep S’myelin feature, a fun and interactive online learning tool for kids. It is designed to facilitate parent/child conversation about MS and its impacts on the family. The Society vigorously encourages those affected by MS to participate in fundraising.

Reach Out and Connect With Others

Seek emotional support from someone who understands what you are experiencing.
Seek emotional support from someone who understands what you are experiencing. | Source

4. Accelerated Cure Project for Multiple Sclerosis

A national non-profit organization that focuses on finding a cure for MS, this organization advances research into the causes and mechanisms of MS by providing medical researchers with access to blood samples from the Accelerated Cure Project Repository www.acceleratedcure.org. The Repository collects samples from volunteer patients with MS and certain other demyelinating diseases.

The Accelerated Cure Project also sponsors the Multiple Sclerosis Discovery Forum (www.msdiscovery.org/news/new_findings), an online resource that seeks to promote collaborative MS research across disciplines. While the forum's articles are written for a scientific audience, they are cutting edge and available to all. I've used the articles to have a more engaging dialog with my neurologist.

Glass Half Full

Honestly, it's not the end of the world.  MS sucks, but you can get through this with support.
Honestly, it's not the end of the world. MS sucks, but you can get through this with support. | Source

Challenges of Multiple Sclerosis

What is the biggest MS-related challenge for you?

See results
There is no cure yet for MS, but some day there will be!  Don't lose hope.
There is no cure yet for MS, but some day there will be! Don't lose hope. | Source

5. Multiple Sclerosis Association of America

This organization is a non-profit whose mission is to alleviate daily challenges faced by those affected by MS www.mymsaa.org. In addition to a special section for newly diagnosed patients, the site offers:

  • on-demand videos, webinars, and web-casts
  • professionally monitored chat rooms
  • information on prescription assistance and clinical trials
  • links to MS articles recently in the news
  • A Resource Locator tool that allows registered users to search for resources within a specific mile radius of their zip code. Their resource listing is extensive and includes 10 different categories, from exercise therapy to housing assistance to equipment for managing disability and chronic illness, and much more.
  • The site also makes available free safety, mobility, and cooling products to income-eligible people with MS and
  • MRI assistance for those who qualify.
  • Finally, their toll-free helpline helps MS patients, care partners and friends by connecting them with a counselor. The counselor can provide information regarding resources that are available to ease the demands of living with MS. Call (800) 532-7667, ext. 154 Monday - Friday, 8:30 am - 5:00 pm
  • You can also download the My MS ManagerTM app to your mobile phone to track your MS flare-ups and comprehensive health history. The app provides information on medications and their side effects.

Stay Motivated: You've Got This

Live your best life with MS through education and building a good support network.  It's not the life I would have chosen, but it's a good life.
Live your best life with MS through education and building a good support network. It's not the life I would have chosen, but it's a good life. | Source

Living With Multiple Sclerosis - One Person's Perspective

Seek Credible Information and Advice and Get Support

Locate objective, reliable information and advice.
Locate objective, reliable information and advice. | Source

© 2013 FlourishAnyway

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    • FlourishAnyway profile image
      Author

      FlourishAnyway 23 months ago from USA

      Relationshipc - I'm sorry that it took so long to discover what the issue was but glad you now have your answer so that you and your husband can connect with others who are struggling with the same challenges. MS is not an easy road but it's not the worst thing either. I wish you both the very best.

    • Relationshipc profile image

      Kari 23 months ago from Alberta, Canada

      My husband spent years living with symptoms that we didn't look deeper into, but we finally couldn't ignore it anymore, spent almost 7 months getting tests and seeing doctors, and finally found out last year that he had MS.

      I feel like the more we researched and interacted with other people who have MS, the less fear we had. Very important to get looking at resources and connecting with others.

    • FlourishAnyway profile image
      Author

      FlourishAnyway 2 years ago from USA

      JMGadoury - I appreciate your stopping by. Many thanks and best wishes for good health.

    • JMGadoury profile image

      J M Gadoury 2 years ago from Richmond, Virginia

      Thank you for writing this hub. Among the myriad of blogs that focus on what has been lost, you have admirably focused on what can be gained. Kudos!

    • FlourishAnyway profile image
      Author

      FlourishAnyway 3 years ago from USA

      Anna - I truly appreciate the compliment. Thank you.

    • Anna Haven profile image

      Anna Haven 3 years ago from Scotland

      An excellent hub with vital resources. Your own energy and resilience is an inspiration to those currently facing chronic health problems and your very skilled writing really highlights your success in the face of adversity. I have the greatest respect for you.

    • FlourishAnyway profile image
      Author

      FlourishAnyway 3 years ago from USA

      ologsinquito - Thank you for your kind words of encouragement. It is not the life I would have chosen, but MS has given me the gift of incredible resilience and grit. From that, I can perhaps help others. Happy New Year!

    • ologsinquito profile image

      ologsinquito 3 years ago from USA

      Sorry you have to go through this. But you seem like a very strong person who will use this difficult situation to reach out and help others.

    • FlourishAnyway profile image
      Author

      FlourishAnyway 3 years ago from USA

      Crafty - I am so sorry about your mother, as MS is a terrible lifelong disease, and I am also sorry that you have to experience this illness as a family member supporting and caring about her. It is a family illness, affecting everyone. Chronic illness is an every day battle, and my heart truly goes out to all of your family. I hope her steroid infusions help (I've been there!). You are in my thoughts. Hugs to you.

    • CraftytotheCore profile image

      CraftytotheCore 3 years ago

      Flourish, my mother has MS. She was diagnosed about 20 years ago. She gets infusions. A couple of weeks ago they found out she has a virus. J Virus or something like that. It's not good. She has to go for some steroid injections, but her immune system is totally compromised right now.

      If I hadn't told you before, I'm so sorry that you have to go through this. I know what my mother has gone through with hers.

    • FlourishAnyway profile image
      Author

      FlourishAnyway 3 years ago from USA

      Rajan - Thank you for reading, commenting, and sharing. It's a tough disease, but with the right resources, support and attitude people can flourish anyway. Have a great day!

    • rajan jolly profile image

      Rajan Singh Jolly 3 years ago from From Mumbai, presently in Jalandhar,INDIA.

      Very informational and useful. Thanks.

      Voted up, useful and shared on G+1.

    • FlourishAnyway profile image
      Author

      FlourishAnyway 3 years ago from USA

      Thank you so much for the read and for sharing, PeggyW! Researchers have developed several new MS drugs that thankfully don't involve daily or weekly injections. Some of the side effects I have personally experienced on interferon-based injectable drugs have been as bad if not worse than the disease itself. I am hopeful that the newest medication provides much needed relief for all of us who live with the disease.

    • Peggy W profile image

      Peggy Woods 3 years ago from Houston, Texas

      Thank you for sharing this wonderful information for people who are also suffering the effects of MS. For those fortunate enough not to have it, it might also give them a greater understanding of the difficulties that MS patients have and might make them more empathetic. Hopefully someday soon great strides will be made in order to help you and others who are afflicted. The video was a good one! Up, useful, interesting votes and will pin this to my Health related subjects board on Pinterest. Also tweeting.

    • FlourishAnyway profile image
      Author

      FlourishAnyway 4 years ago from USA

      Thank you for the encouragement, vandynegl. I, too, believe that diet, supplements, and lifestyle factors can have a tremendous impact on symptom management. I certainly hope your issues don't find you down the MS path, but even if they do it is possible to live a happy and productive life. I am a fairly "difficult" patient but it serves me well. I ask lots of questions, read all the fine print from those prescription leaflets, educate myself in the medical literature, and do not hesitate to ask my doctors to step me through their decision making on tests, medicines, etc. Thanks for reading and commenting!

    • vandynegl profile image

      vandynegl 4 years ago from Ohio Valley

      Great information! I appreciate you sharing this! I have done some research myself on MS, since I was tested for it in 2011. I was having some "nerve related" issues, but my results came back negative. In the learning process though, I uncovered some motivational stories from people who have the disease, but are able to control many of the symptoms and extend the time between their episodes. These people inspired me to be more of an advocate for natural health. With the nerve issues I was having, I began rearranging my diet and using specific supplements to help with the damage. It has helped tremendously!

      Way to go on being so knowledgeable on this! That is how we have to be!

    • FlourishAnyway profile image
      Author

      FlourishAnyway 4 years ago from USA

      LongTimeMother, thank you so much for your words of support. It is so hard to describe the assorted effects of this disease, but the video provided an empathic, sometimes humorous explanation. I appreciate our kind words and pointing folks this way!

    • LongTimeMother profile image

      LongTimeMother 4 years ago from Australia

      FlourishAnyway, this is an awesome hub. I am pleased to see there is so much support available in the US, and I believe there are a lot of people who will benefit from the information you offer here.

      That video by Jessica Duley is beautiful. It gave me a much clearer understanding of how MS can change one's life.

      I am in awe of your ability to flourish anyway, despite having MS for ten years. I hope you continue to write many hubs. I am pointing a few people in the direction of this one. Thanks for writing it. :)

    • FlourishAnyway profile image
      Author

      FlourishAnyway 4 years ago from USA

      Thanks, Dolores! I appreciate the read and your comment.

    • Dolores Monet profile image

      Dolores Monet 4 years ago from East Coast, United States

      What a wonderful hub offering resources for people suffering with MS, either themselves, or their families. Here is another great thing about the internet (and internet writers such as yourself) - that so much more information is available to people on so many subjects. It's wonderful!

    • FlourishAnyway profile image
      Author

      FlourishAnyway 4 years ago from USA

      Thank you for stopping by and for your kindness. I wish you and your family all the best.

    • pstraubie48 profile image

      Patricia Scott 4 years ago from sunny Florida

      Well done. this is helpful information for those who suffer with this. My daughter has it on top of all of her other issues so it is one more mountain to climb. But we keep on climbing.

      thanks for sharing this.

      Sending Angels your way this evening :) ps

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