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Thread: Recording of MS International Federation Webinar on progressive MS available

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    Distinguished Community Member agate's Avatar
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    Default Recording of MS International Federation Webinar on progressive MS available

    Yesterday there was an hour-long Webinar on progressive MS from the MS International Federation. It's now available in recorded form:

    https://msif.netdonor.net/ea-action/...st_target_id=0

    Questions on assorted topics are answered by two panelists:

    Professor Alan Thompson, Consultant in Neurology for the National Hospital for Neurology and Neurosurgery (NHNN), whose specialty is MS

    and

    Dr. Olga Ciccarelli, also of the National Hospital for Neurology and Neurosurgery
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Distinguished Community Member Lazarus's Avatar
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    Thanks...your efforts are greatly appreciated.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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    Distinguished Community Member Lazarus's Avatar
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    Agate,
    I listened to the first 15 minutes....did it seem to you to be a simple rehashing of what is common knowledge?

    What was interesting is the commentary about treatments, the research process and the prescribing information related to RRMS and PPMS. Many MSers say that there are no meds for progressive forms of MS. that is technically true, BUT, there are many meds that have been shown to work to help us.

    Major research takes decades to be tested, retested, tested on different groups...all data collected and reviewed. So, the labeling of a med as an RRMS drug does not mean it will not also help PPMS. I am currently taking a cancer drug which in fact helps my SPMS. I am using it off label because there is some research that made them think it would be useful. Researchers were correct. It helps me. But there is not scientific documentation in wide clinical trials. Yet.

    What I am saying is that we need to disregard the labels on treatments and have neurologists who will work with us to find the management that works. I have used 3 or 4 drugs off label and each has been helpful. There is tons of research going on. It is helping. We are getting results. Some of us have been lucky because of this.

    If your neurologists are telling you that there are no meds for you or that you are too old...get a better neurologist!

    I hope this makes sense ...I just want people to realize that there are possibilities out there...the research progress that has been made in my own 25 year battle is astounding. The day of my diagnosis there was nothing. The neuro told me to go home and continue on as best I could. Things have changed since then!
    Last edited by Lazarus; 11-29-2014 at 06:20 AM.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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    Distinguished Community Member agate's Avatar
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    Quote Originally Posted by Lazarus View Post
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    Agate,
    I listened to the first 15 minutes....did it seem to you to be a simple rehashing of what is common knowledge?
    Mostly, yes, but I thought it was a fairly well presented Webinar compared to some I've looked at. I wanted to have something to post here during the slower holiday season, and so in a way it's just filler.

    But it came as news to me when (discussing neuroprotection) Professor Thompson stated that many drugs long used in epilepsy--phenytoin, for example--are known to be neuroprotective and might prove useful in MS.

    I've been following news on possible treatments for progressive MS and have noticed that recently there's more of a view that there's not much point in prescribing MS drugs off label for people with progressive MS because often the side-effects of the drugs cause problems for progressive MS patients, who are probably dealing with MS symptoms on a daily basis anyway. The thinking seems to be: Why make these people go through even more physical problems than they already have, just to take a drug that doesn't seem to work for them?

    I believed in trying the drugs anyway myself, and I did that for 6 years. I'm seriously considering going back to Copaxone, just in case it might have been helping. The neuro thought it might have been having a good effect.

    The session closed with Professor Thompson's statement that you can anticipate a treatment for progressive MS "within a finite period of time."

    This last remark seems to me to have very little meaning!
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    I do Cellcept which is an immune suppressor for kidney transplant patients.
    Thanks for reminder
    ~Susan
    Be the person your dog thinks you are

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