Tuesday, September 1, 2009

More MS on the Internet

Diagram of neuron with arrows but no labels. M...Image via Wikipedia

Since my last entry updated a post I made several months ago, I figured I'd keep the trend going by updating yet another post I made several months back, which was titled "MS on the Internet". That post was made up of a list of Multiple Sclerosis related websites that I find useful, and it received a good response from WK readers.

Since then, I've come across several additional websites that I think are of value. Most of these sites aren't devoted strictly to Multiple Sclerosis, but offer a wealth of information on neurology and general healthcare, in addition to having sections specific to MS...

Can you tell I spend way too much time on the web?

TheBrainMatters.org-This website is run by the American Academy of Neurology, and covers a wide range of neurologic disorders, including a section devoted to Multiple Sclerosis. It also has a "Find a Neurologist" tool, which users might find very helpful.

The Neurology Patient Pages-This site contains summaries of research studies from the journal Neurology, prepared especially for patients. Although not all of the studies are pertinent to Multiple Sclerosis, the summaries are a rich resource for information on all neurologic disorders.

Wellsphere-A general wellness information site, with lots of good material on nutrition and alternative and complementary therapies. The site hosts some educational and user-friendly patient communities, and has even named Wheelchair Kamikaze as one of their "Top Health Bloggers".

Patients Like Me-This is a unique website, which allows patients to set up their own profiles, and track the progression of their disease and the treatments that they undergo. Covering a wide range of conditions and diseases, this site allows users to "compare notes" with other patients who share similar experiences. The site also hosts some active patient forums.

The National Institute of Neurologic Disorders and Stroke-This is the official website of the NINDS, which is the arm of the National Institutes of Health responsible for all government-funded neurologic research. The site is a treasure trove of information on all neurological disorders, as well as info on clinical trials and patient resources.

ClinicalTrials.gov-A comprehensive registry of all federally and privately financed clinical trials conducted in the United States and worldwide. The listings include inclusion criteria as well as contact information for all of the trials. If you're interested in getting involved in a clinical trial, this is the place to look. The registry is easily searchable by disease and location.

MedlinePlus-A terrific site that includes information on the latest medical news, drugs and supplements, a medical dictionary, a medical encyclopedia, and a directory of physicians and hospitals.

NeurologyChannel.com-Run by physicians, the site offers a wide range of information and services, including a patient forum, and a section devoted to patient stories.

The Health Care Blog-An great site for commentary on healthcare issues and policy. Makes for some very interesting reading.

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  1. Marc, Patient's Like Me is the group I wrote the letter to the Times about last year. Do you remember? I found it to be more like a creepy cult than anything else. If you don't keep up with entering your data, they send you scary e-mails accusing you of not supporting the community!!! YIKES!!!

    But thanks for the awesome research you do for us. You are the best!! xoxo

  2. Hey - what about MSV&N ?
    MS Views and News is dedicated to the global collection and distribution of current information concerning Multiple Sclerosis. In collaboration with other organizations, MS Views and News uses state-of-the-art communication channels to provide information for those affected by, or interested in MS.

    Unique in what we do. Bridging the gap to all major MS Organizations.
    Providing information and resources from our website, daily via our blog and weekly by our e-newsletter (Stu's Views and MS Related News).

    "Stu's Views and MS Related News", a weekly MS e-Newsletter. Currently being globally viewed by e-recipients in (53) Countries, who want to know more of Multiple Sclerosis and want to be kept abreast of all news worthy items concerning this disease.

    To register, if not yet receiving this weekly e-newsletter, please click here: http://www.msviewsandnews.org -
    When the website opens, click the link that reads register for our e-newsletter.

  3. Hey Marc ---
    The above listings are great fro all affected by MS.. I am going to place a link on my blog, so that others can see your listings as well.

    When's the next video coming?
    Yea great - from Yankee Stadium would be awesome...

    Have a Great Day.


  4. Boy, I sure can use this info you posted. Thanks, Marc.

  5. Oh, and congratulations on being awarded Wellsphere's Top Health Blogger. Not surprising... you're a natural born winner. I thought I noticed an award badge w/your name from a previous post.

  6. i currently use patients like me, and have found it very useful

    when i thought a new med wasnt working i just pulled up my profile and there was all the proof i needed.

  7. I like Stuart's MSV&N. It has lots of info. centralized for easy accesss. But sometimes (on bad MS days) it overwhelms me. I would like to make a donation, but my hubby says NO. I'm working on that. I get a daily Post from Patients Like Me--it's too much info. & many days I just delete it. It's useful if you need to ask a question of your peers.

  8. List of PML diseases under Tysabri:

  9. Hello marc,

    your blog is very great, i love it.....i have also multiple scleroses.....i can walk 300 m, sometimes 500 m .......for longer distances i use also a weelchair......i have also a handycam and in the future i`ll make also videos....
    a lot of greetings from germany


    mail: elektropost@ms-notes.de