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New RRMS lady

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    #1

    New RRMS lady

    Hello, and thanks for being here. I had my "stroke like" attack 6 months ago...after being told by all doctors "I Don't Think You Have MS" for several years. I am in mid-50s, so each time I heard No MS, I was relieved and just went about my business. So, 6 months ago, my world erupted and changed. I was working, driving, living....that all came to a halt. Now, I am reading all about MS, searching out SS Disability Insurance, shooting up Copaxone daily and hoping I can get my balance again.

    I hope my RRMS is correctly diagnosed, but I hear everyone is given a RRMS diagnosis to start. I feel as though after 5 month (4 months on Copaxone) I should be done with my attack, but I feel maybe I am progressing although my recent MRI is still looking the same as 5 months ago.

    Any advice on what to ask my Neurologist in a few days for my follow up?
    Tags: None
    #2
    Welcome to the boards. I am sorry that you have MS. I wish I could suggest something to you but I have nothing. Good luck

    Comment

      #3
      Hi GrammySue and welcome to MSWorld! We're glad you reached out to us as no one else really understands what living with MS is like better than we do.

      For your next appt here is a link that may help you http://ms.about.com/od/livingwellwit...eurologist.htm (I like the part about giving yourself a pep talk )

      Arm yourself with notes of recent symptoms and dates of occurrence as well as a list of questions - your question here - "I should be done with my attack, but I feel maybe I am progressing although my recent MRI is still looking the same as 5 months ago." is a good point and should be discussed with your neuro.

      I always try to prioritize my questions because sometimes the Dr is busy with other patients and doesn't spend as much time with me as I'd like. I hope this is not your case and you get all your questions answered!

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

      Comment

        #4
        Evening, GrammySue.

        Trust me, these flares can last a long, long, long time. My last MRI looks roughly the same as the first diagnostic one I had 16 years ago.

        If I'd not been diagnosed back then, which was hard to avoid, thanks to optic neuritis, I'd have gone 12 happy years never knowing.

        Yes, bit of a numb finger, yes, bit tired, but no trouble walking.

        However, I did get to start Beta immediately, which no doubt delayed things.

        Ask your neurologist about the correlation between MRIs and progression. I'd love to hear a straight answer.

        Comment

          #5
          GrammySue

          welcome to the boards. Good luck on your journey with MS. I am also a grammy named Sue, LOL. I personally keep a journal and when something happens that I wish to talk to neuro with I reference to it. It is great, whereas my memory isn't what it used to be.
          Good Luck & safe/healthy journey.


          RRMS--Rebif
          dx'd Nov.2013

          Comment

            #6
            Journaling

            Keeping a journal is a wonderful idea! My only problem is I don't know all the symptoms yet, & I have many other illnesses, so how do you distinguish?

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              #7
              Thanks all

              I'm grateful to all here to support each other. Sheesh, I wish we all had something else in common! Anyone wonder if it's really RRMS...or worse? And, are the others worse? I just wonder if everyone gets a DX of RRMS first...then you must wait and see...

              Comment

                #8
                No doubt that your MS doctor wanted to make sure you could get the benefit of using one of the approved meds. That's probably the reason your dx is RRMS. But, I am sure the doctor is seeing other symptoms that lead to the RRMS dx, also. At least there are FDA approved drugs to use. Good luck

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                  #9
                  :-(

                  I am sorry to answer so late.
                  I put everything significant down in my journal, my neuro decides what is relavent and we go from there. He is fantastic.
                  Good luck

                  Comment

                    #10
                    Another one

                    Hi there - I just thought I'd chime in and say I'm another grammy whose name is Sue. I have 14 grandchildren (7 boys and 7 girls so far) and feel so blessed. Needing to stay as strong as possible to watch them all grow up. I must say it is a challenge at times, but staying optimistic. Praying the best for all of you.

                    Comment

                      #11
                      Copaxone for 7 months now

                      I wonder when I read all of our info "does RRMS really exist"? It seems that everyone is diagnosed initially with Relapsing Remitting MS, but how can that be. How can you be relapsing if it is your first attach?

                      Am I reading too much into this??

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