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    #1

    Me

    Hello Everyone, my name is Erika I have what they call PPMS. I sometimes think I do not have this and other days I think I do. I do not know much about it, and I must have had so many neurologist I don't know if I am coming or going. I am currently working and I have 1 yr. to go before I retire. There is not much to tell, I am married and I have two wonderful children and 1 grandson who I love dearly. I had a neurologist for a few years until I went to see a MS specialist. The MS specialist told me that I did not have to take copaxon because it did nothing for me, I told him are you kidding? I was sticking myself all those years (2) and it did nothing for me. He told me that the MS I had didn't have any medication for. The MS doctor I had was good, unfortunately he left the hospital. I had another one who took his place and I really liked him. Unfortunately, he left also. Now I do not have a neurologist or an MS doctor. I do not know what to do.: confused

    Erika
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    #2
    Hi Erika, welcome

    How old is your grandson?

    If you are interested, there is a member topic for September posted in the forum here about Neurologists: http://www.msworld.org/forum/showthr...80#post1495980

    Comment

      #3
      Hi and welcome.
      He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
      Anonymous

      Comment

        #4
        Finding a Neurologist

        Erika,

        This link might be helpful in finding an MS Specialist:
        http://patients.aan.com/findaneurologist/

        Personal referrals from others diagnosed with MS are even better.

        Best Wishes!

        Alan

        Comment

          #5
          Possible Early Access to Ocrelizumab for people diagnosed with PPMS

          Genentech has a drug that if approved by the FDA will be for Progressive MS. This drug currently has Breakthrough Therapy Designation by the FDA: http://www.nationalmssociety.org/Abo...erapy-Designat

          It's called Ocrelizumab. Not yet approved, but approval is likely late this year.
          Check out this link: www.mssignup.com/
          Genentech also has an Expanded Access Program (EAP), for patients with PPMS. An EAP allows a limited group of patients, who meet specific criteria, to have access to a specific investigational medicine.
          People interested in learning more about the EAP should contact the Genentech Trial Information Support Line.

          Trial Information Support Line (TISL)

          (888) 662-6728

          6 a.m. - 3 p.m. PST M-F

          Hope this is helpful!

          All The Best,
          Alan

          Comment

            #6
            Hi Erika,

            Welcome to MSWorld! I hope you can find a new neurologist, especially with Ocrelizumab on the horizon. Kind of in the same boat as you, but because my MS Specialist unexpectedly passed away. He was very positive about this drug, and involved in both the PPMS and RRMS clinical trials. More positive data was also recently released.

            Here is some more info:

            https://multiplesclerosisnewstoday.c...and-primary-ms

            http://www.fiercebiotech.com/biotech...y-fda-approval

            Good luck,
            Kimba

            “When you change the way you look at things, the things you look at change.” ― Max Planck

            Comment

              #7
              thanks for the information guys

              Erika... I'm sorry about that.

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