Announcement

Collapse
No announcement yet.

News for the newly diagnosed

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    News for the newly diagnosed

    A friend's brother in his late thirties just got diagnosed with MS. Can anyone recommend any resources I can direct him to? Just a few aspects I'd like to cover are the variability of the disease and range of potential courses, the genetic aspect (the chance of his child developing MS are not significantly higher, are they?), the state of research and causes for hope. Any good guide to the drugs also would be good. I also would like to share useful information on Ampya, both for him and to share with his doctor, as I've been shocked to realize it is not as as strong a component of the repertoire of the community neurologist as I would expect.

    I'd appreciate learning of any information you think might be useful. Thanks.

    #2
    There are many, many good websites devoted to MS. One of my favorites is this British site. Another excellent site is mult-sclerosis, and the National MS Society is a valuable resource. Mayo has some good general info, too.
    MS with cervical and thoracic cord lesions

    Comment


      #3
      I would also encourage your friend to reach out to his local MS Society chapter. Most have active support and education groups, often groups that are specifically for the newly diagnosed. When my mother was ready (about a year after her diagnosis) she found her local group an invaluable source of both information and support, and 30 years later, members of the group remain among her closest friends.

      The MS Society also sponsors both webinars and telephone conference calls for members, for free, often with nationally or internationally known experts presenting on some topic, all of which can offer participation right from his own home.

      I would strongly encourage your friend to go to a clinic and see a neurologist who specialize in MS. The general neurologist will not be up on the latest drugs and research.

      There is a genetic component, although it is not real clear. A person who has a parent with MS has a 1 in 50 chance of getting MS themselves, but even in identical twins, only 30% of the time do both get MS. Those of Scandinavian and northern European heritage have the highest risks.

      (KLD)
      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

      Comment


        #4
        Many thanks!

        Comment


          #5
          Here's an additional site I recently found ansd like not listed.

          MS Association of America

          Patients lik me is a great site too.
          Best Regards,
          Minnie

          Comment


            #6
            I am so sorry to hear this.

            Besides coming here and the ones listed above:

            www.msactivesource.com

            http://www.msfocus.org/about.aspx

            http://friendswithms.ning.com/

            http://ms.about.com/od/multiplescler.../a/ms_edss.htm

            http://www.msworld.org/

            http://www.msrc.co.uk/index.cfm?CFID...TOKEN=82239764

            http://www.overcomingmultiplesclerosis.org/

            http://www.mult-sclerosis.org/

            http://www.thisisms.com/forum/

            http://neurology.ucsf.edu/msc/faq.htm

            http://home.ampyra.com/splash/?ssva_...d2bc155e4b8e8f

            Please feel free to PM me if you want more info. My husband has been taking Ampyra since it was brought to market.

            Lisa

            Comment


              #7
              Some really good websites stated in above posts. A little effort that i'm making is also worth availing. I'm running a blog especially for MSers. All the latest news and discoveries are updated there all the time. Hope it helps you out.
              Wellwisher!

              Comment

              Working...
              X