Relapsing-Remitting MS Diagnosis, Optical Neuritis: Most Helpful Resources

Merely Me Health Guide
  • There is an old song by this title and I am sure you have heard the refrain:  "Getting to know you, Getting to know all about you."

     

    As a writer here on Health Central I have the wonderful opportunity that many print writers do not have.  I can get to know my readers.  One aspect that I personally do love about writing on the internet is that I have the chance to receive feedback.  And your feedback is what I hope to gain by writing this particular post. Your experiences, your thoughts, and your ideas are important to us and are critical to making this site the best it can be.  And also it helps me directly to becoming a better writer and advocate.  I am so grateful to have been given the opportunity to write here and I want to do the very best job I can. 

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    If you could spare a moment it would be really helpful for me to know a few things about you.

     

    1.  Have you been diagnosed with MS or are you in the limbo stage of waiting for a diagnosis?  Are you a caretaker, friend or fellow blogger of someone who has Multiple Sclerosis? 

     

    2.  If you have been officially diagnosed with Multiple Sclerosis, what type of MS do you have?

     

    3.  If you have MS, how long have you had it? 

     

    In all fairness I will tell you a little about myself.  I have been diagnosed with the relapsing remitting type of Multiple Sclerosis.  I was officially diagnosed just last year in October.  However, I had my first symptom, Optical Neuritis, over ten years ago! 

     

    I remember that prior to my diagnosis I was researching like crazy on the Internet.  I was hungry for information and statistics about this disease but primarily I was looking for posts and articles written about the personal experience of having Multiple Sclerosis.  Facts and figures can only go so far to tell you about the human experience.  I wanted to know how people live and cope with having this disease.  I wanted to know what my day to day struggles might entail.  I suppose most of all I wanted an honest portrayal.  I stayed away from stories which were either too saccharine laced or on the other hand, too gloom and doom.  I wasn't ready to hear about people climbing mountains or running marathons nor was I ready to hear about the worst and tragic cases.  I was searching for information and stories which would help me to feel less afraid and would also help me to begin the process of acceptance.

     

    So that is my personal take on things but what is yours? 

     

    *  What sorts of information and stories do you want us to provide?  What sorts of articles are most helpful or inspirational to you?  Which topics do you wish we would cover more? 

     

    *  What sorts of communication mediums do you most enjoy?  Do you enjoy written posts, videos, or even podcasts?  Is it helpful to see more images? 

     

    *  What keeps you coming back to Multiple Sclerosis Central?  What features are most important to you? 

     

    * Do you have any suggestions for improving the site?

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    I don't wish to overwhelm.  Even if you answer but one of these questions, it would be useful in helping to better understand your needs.  Your input is valued.  Without you, the reader, this site would not exist.

     

    Here is your chance to tell us what you think!  I am very eager to hear your thoughts and ideas.

     

     

Published On: October 27, 2008