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    #1

    Hi!!

    Hi there, I am Rachel and I have ??????.....

    This new journey I am actually started about 16 months ago when I woke up and could not see out of my right eye...after a trip to the ER, a CT and a neuro-opto, I was told I had a case of "optic neuritis" and things would be back to normal in 6-8 weeks and guess what... They were!!!!

    Besides a few "near misses" and a "few" holy cruds did I really just pee my bed - some cold toes, I had a pretty perfect year!! I even got a boyfriend!!!


    Mid Feb 2013 my life changed....
    1. I fell down the stairs - and nope I was not drunk....
    2. My whole body but mainly my legs felt like I had the flu
    3. Major pain in my right eye again....ARE YOU KIDDING ME???
    4. A trip to the local ER to be told a had yet another UTI
    5. An emergency brain MRI another confirmed case of "optic neuritis"
    6. Down in the shower I went....really my legs were just shaved....
    7. Another trip to a different ER which ended up me staying in the Nuero ICU for two days
    8. A very painful spinal tap
    9. A full body MRI
    10. 5 very long more days in the hospital getting some IV steroid I have never heard of that made me hot, cold, angry, sad and to top it off gave me a horrible horrible taste in my mouth.

    Here I am about to be 34 years old and a single mom of a 4 year old with a new shiny walker because I am weak but getting stronger and unable to really hold pen (but hey I can text!!!)

    I have been home from the hospital 4 days....in that four days I have been told that my diagnosis will either be MS or NMO....that I am not released to go back to work till after April 26th....both things I have never heard of...are the doctors really sure????

    I have 1 lesion on my brain and one lesion on my spine....

    I am waiting on the NMO antigen blood results....

    I now have a PT nurse that is coming to my house, an OT nurse and a thousands and 1 questions....

    I am scared to "google" anymore than I already have and I am scared that I will not be able to take care of my daughter ....


    A friend recommended MS world to me ....so here I am in limbo as I wait .....
    Jan 2012 - Onset of ON
    Feb 2013 - 2nd DX of ON
    March 2013 - 5 days IV steroids
    April 2013 - 5 days IV steroids
    June 5, 2013 - DX of RMMS
    Tags: None
    #2
    Hi Rachel! Welcome to MS World! You have come to the right place! I am sorry you are having to wait for a diagnosis. That can be such a hard thing but it is good to get the correct diagnosis since NMO is treated so much differently than MS, and they are so much alike.

    Check out our boards, especially our limbo landers/newly diagnosed boards as many can relate there. There are some chat rooms here too you might enjoy.

    Luckily you have lesions, and they have narrowed down your diagnoses to two. All you are waiting on is the bloodwork it seems.

    Good luck!
    Lisa
    Moderation Team
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri

    Comment

      #3
      Hello and Welcome Rachel,

      I know it's no fun being in Limbo, I'm there too. But we're a great bunch here. We're here for any questions you may have. You'll get answers from people who are living with MS everyday.

      Feel free to read through the forums, it's an education in it's own class!

      People here are friendly and caring. Welcome to the bunch!
      When I can laugh at my experiences, I own them and they don't own me!

      Comment

        #4
        Hi Rachel, came by to welcome you to the site. Every one is here for mutual support. Waiting for a diagnosis can be frustrating so come here for any information, support, or to vent if you need to. I hope your dx goes quickly and smoothly. Take care Dale
        Dale in NC, dx'ed 2000, now SPMS

        Comment

          #5
          Thank you all ... I have been looking around and learning things .... so much makes sense ... like WHOA
          Jan 2012 - Onset of ON
          Feb 2013 - 2nd DX of ON
          March 2013 - 5 days IV steroids
          April 2013 - 5 days IV steroids
          June 5, 2013 - DX of RMMS

          Comment

            #6
            Hi, I just want to share with you I am a newly diagnosed (11/2012 rrms) 30yr old mother of a soon to be 3yr old girl. I want you to know that if you are diagnosed not to worry so much especially about being able to take care of your child there are many treatments out there that will help you on a daily basis.

            Love Hope and Faith
            God Bless You

            Comment

              #7
              Thank you!!!! I know I will get there ... it is just still a worry ...
              Jan 2012 - Onset of ON
              Feb 2013 - 2nd DX of ON
              March 2013 - 5 days IV steroids
              April 2013 - 5 days IV steroids
              June 5, 2013 - DX of RMMS

              Comment

                #8
                Rachel,

                I know it's hard not to worry so I won't tell you not to. What I can tell you is that once you're diagnosed, you can be treated.

                I'm still in limbo but I'm also being treated. There is always a way to deal with what we're going through. There is always help available.

                The best you can do now is be there for your daughter. Let your doctor treat you, and be informed. This is the perfect place to do that, so you're already in the right place.

                Vent if you need to, go to chat room, post questions. We're all here to help each other, and we do what we can.

                I hope you feel better soon!
                When I can laugh at my experiences, I own them and they don't own me!

                Comment

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