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MN-166 (Ibudilast) Clinical Trial for Progressive MS

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    #16
    Med reords

    J-Bo. Sorry to hear that your medical provider is so bad about responding to your request. At my job, we sometimes need medical records sent to a specialist, etc. It really sucks when a provider drags their feet. Since we can't access the records for employees, we wind up telling them that they need to call, go park themselves, etc. to get their records themselves. If you haven't gone that route already, that's my suggestion; tell them you'll pick them up and make the appointment.

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      #17
      They finally did send the records. Unfortunately, I've been turned down for the trial. Part of the reason is that my doctors here never documented my MS progression. Like they never documented the 25-foot walking test. They had me do the test, but apparently never recorded it. Along with any other evidence that I've had increasing disability. I've cancelled my next appointment with my MS specialist here, and never letting them have anything to do with my care ever again. They are totally negligent. They will never get another chance from me.
      PPMS
      Dx 07/13

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        #18
        You go, j-Bo. You should raise some hell about this to the Pa state medical board. And find another specialist. This current neurologist's foolishness (malfeasance) has caused you to miss out on a chance to find treatment in this study. What a loser ! Good luck

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          #19
          J-Bo's Doctors

          J-Bo -

          I'm so sorry that your doctors basically crapped on you. Hopefully, you won't have trouble finding new and responsible providers. With any luck, there will be new clinical trials that open up to you. You're due some better luck. We're all due some better luck. Here's hoping that we get it.

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            #20
            Thanks Jerry and BGJ. Yeah, this doctor has been a huge disappointment in so many ways. The last visit with him, he didn't bother to do even the basic neurological exam--and I mean he tested nothing. No "track my finger with your eyes," no testing of limb strength, no "walk for me." All he did was talk to me, mostly telling me how many years of experience he has with MS research. He never ordered blood work for WBC while I was on Tecfidera, and no JC virus test (turned out I'm positive with a very high number). I had to keep pestering his office to get those ordered. He never told me before my hip surgery that it could wreak havoc with my nervous system, and then after the fact, when I'm suffering from excruciating nerve pain, says, "oh yeah, those kind of problems are very common in people with MS who have surgery" as if I was just supposed to know that. And I haven't had any MRIs in almost two years.

            Oh, and he has told me on various occasions that heat sensitivity, fatigue, and pain are not all that prevalent with MS. When I asked "Why then are all of those listed on the NMS web page as the most common symptoms?" he said "Oh, they really don't know that much." I swear, I'm not making that up, he really did say that. I know a lot of us aren't the biggest fans of the NMS, mostly because of their relationship with drug companies and what research they choose to fund, but I doubt anyone here would say that they don't know much about the disease!

            Now that I've finally had all my records sent to Cleveland Clinic, that is where I am going for my care from now on, and I have an appointment set up for later this month. I supposedly live in a city that has a world-class healthcare system, and I have to drive 2-3 hours to another state to be seen by someone who might at least act like he cares.

            I should have known. I had to go to Cleveland just to get diagnosed in the first place because all I got here was "Who knows? Thanks for playing, and we'll see you again in six months for further cluelessness and head scratching."

            How is it possible that so many of us are subjected to so many lousy doctors? I know there are many good ones out there, but they seem so hard to find.
            PPMS
            Dx 07/13

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              #21
              Any new information?

              I heard it has been fast-tracked by the FDA.
              I left in love, in laughter, and in truth, and wherever truth, love and laughter abide, I am there in spirit.

              Bill Hicks

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                #22
                Hi durgastiger

                I thought it was still in phase 3 trials...? Pretty sure they're not concluded yet. Maybe someone else has info on this?
                PPMS
                Dx 07/13

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                  #23
                  Ibudilast Check-in

                  Hi,

                  I know this is an old post, but I was just curious if anyone has any updates on Ibudilast. I know it's being fast-tracked....and curious if those that have been on the trial had success (if they know they received the drug).

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                    #24
                    MediciNova, Inc. has announced that the experimental oral therapy MN-166 (ibudilast) has been designated by the U.S. Food and Drug Administration as a “Fast Track Product” in terms of its development as a possible treatment of progressive MS, including secondary progressive and primary progressive MS.

                    Fast Track is a process designed to facilitate the development, and expedite the review of, treatments for serious conditions and fill an unmet medical need. Fast Track would apply once the company submits the data from phase III trials to the FDA, along with a New Drug Application.

                    The current Phase II trial report should be available next year.

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