When I was diagnosed with MS in 2003, I felt alone, confused, and overwhelmed. These five websites provided with much-needed support.
You Are Not Alone
Multiple sclerosis (MS) 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 the disease 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 this disease, here is a list of top-quality online 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.
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.
What Are Common and Uncommon Symptoms of MS?
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
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
difficulty raising one's foot (foot drop)
difficulty thinking or processing quickly
bladder or bowel dysfunction
muscle cramping, spasms, paralysis & rigidity
inability to rapidly change motions
uncontrollable laughing and/or crying
The Bright Side: Priority Parking
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
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
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
Challenges of Multiple Sclerosis
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
Living With Multiple Sclerosis - One Person's Perspective
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
© 2013 FlourishAnyway
FlourishAnyway (author) from USA on May 16, 2015:
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.
Kari on May 16, 2015:
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 (author) from USA on September 25, 2014:
JMGadoury - I appreciate your stopping by. Many thanks and best wishes for good health.
J M Gadoury from Richmond, Virginia on September 25, 2014:
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 (author) from USA on March 30, 2014:
Anna - I truly appreciate the compliment. Thank you.
Anna Haven from Scotland on March 29, 2014:
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 (author) from USA on December 31, 2013:
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 from USA on December 31, 2013:
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 (author) from USA on November 14, 2013:
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 on November 14, 2013:
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 (author) from USA on August 17, 2013:
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 Singh Jolly from From Mumbai, presently in Jalandhar, INDIA. on August 17, 2013:
Very informational and useful. Thanks.
Voted up, useful and shared on G+1.
FlourishAnyway (author) from USA on May 19, 2013:
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 Woods from Houston, Texas on May 19, 2013:
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 (author) from USA on April 28, 2013:
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 from Ohio Valley on April 27, 2013:
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 (author) from USA on April 27, 2013:
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 from Australia on April 27, 2013:
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 (author) from USA on April 14, 2013:
Thanks, Dolores! I appreciate the read and your comment.
Dolores Monet from East Coast, United States on April 14, 2013:
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 (author) from USA on April 02, 2013:
Thank you for stopping by and for your kindness. I wish you and your family all the best.
Patricia Scott from North Central Florida on April 02, 2013:
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