Announcement

Collapse
No announcement yet.

New here, but not really 'new' to here.

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

    New here, but not really 'new' to here.

    Hello everyone, my name is Suzanne and I have had MS since at least 1993. Like many of you, I had symptoms and testing for MS for 13+ years prior to getting a positive diagnosis 7 years ago. I've been through years of every test conceivable with -0- results, Drs. that treated me plum awful when they couldn't find answers and blamed me, a few more years of giving up completely and trying to ignore my symptoms cause "Hey, I'm the crazy one, right?" to finally "Huh! I'll be darned, your spine looks like swiss cheese on your MRI." (The vast majority of my MS is in my spine which was never checked on an MRI until the last one before my positive diagnosis).

    I know from all the reading I've done here over the years that many of us have 'been there, done that' just trying to get to the point of "You do have MS". I know the frustrations and finally the feeling of vindication followed by the "Now what?"

    I have followed this board for many years but have only recently gotten up the nerve to not only accept that I have MS but to talk about it with others.

    For those of you trying to get diagnosed, hang in there. It can (and probably will) be the most frustrating thing you will ever face in your entire life. Do not let Drs. push you 'off', don't ever be afraid to fight for you life, health and well being. You are the only one who understands what's going on inside your body and you have to be your own biggest advocate in this struggle.

    For the rest of us who have MS I can only say "Hang in there, I can relate and we're all in this fight together".

    #2
    Thank you for that! I was to the point where I thought I was having mental issues. How could I be so sick, but "nothing is wrong". Welcome to you! I look forward to hearing more about your journey. I'm new here too; I've just made myself at home though

    Comment


      #3
      Hi Suzanne and welcome! Glad you finally decided to introduce yourself, so lurk no more

      Do I ever understand the dx process - I had one neuro tell me I was only having a nervous breakdown (I fired him) and another one who was dumb enough to ask me what I thought it was (fired him too!)

      Acceptance can be a long slow winding (and bumpy) road and it's good that you have reached a place where there is a smooth straight open road ahead. I also "ditto" what you say to others in limbo - I have always said you've got to be your own best friend and advocate.

      Keep fighting and again, welcome
      1st sx '89 Dx '99 w/RRMS - SP since 2010
      Administrator Message Boards/Moderator

      Comment


        #4
        Thank you, it means a lot to me.

        Amy, my journey 'to MS' has been an agonizing one. Because it took so long for me to get a diagnosis, Drs. were becoming angry with me. There just weren't any 'identifying markers' they could pin to one disease. As a result, I was treated in a manner that truly no human being should ever face. One Dr. in particular ordered tests for me that were so grueling, so humiliating that on looking back, I believe he did it simply to 'teach me a lesson'.

        In my early years, I had a promising job working as a para-legal and when I became ill and no one could find anything wrong, I was forced to resign from my job. People I worked with turned against me, members of my family turned against me and against each other, Drs. definately turned against me.

        I went from being a happy, sunny human being so willing to help others at a moments notice to an angry, bitter human being. As a result of all this I am now a shell of the person I was (if she's even there anymore, I don't think she is). The only thing that got me through it were my husband and parents support. I have now put up a wall and hardend my heart, there is no other way to express it.

        When I told my MS Spec. Dr. Melanson this story she cried and said "I've heard this story over and over". I've never seen a Dr. cry before and she had tears running down her face.

        If I could help just one person to know that 'no, you're not crazy, please don't give up!' after what I've gone through it would be worth it. I'm trying to get there, I'm not sure if I even can anymore but registering here is a huge step for me.

        I want to be able to say "MS doesn't have me!" but sadly it does, it has destroyed me and destroyed my life. At this point I have no where else to go but up.

        Comment


          #5
          I feel the same has happened to the person that I 'used to be'. I appreciate your story. Thanks for telling it to us. Keep up the fight. Good luck.

          Comment

          Working...
          X