Narcoms Summer 2015 Issue

[pennstater]

I received my Narcoms Summer 2015 magazine in the mail. I do still like the physical copy, as easier for me to read an absorb than online.

Just curious, do other members participate in the survey? I dread filling it out, but then always so glad I did when updates are published.

They had their feature article on progression and research efforts. I think voices have been heard: "a lot of research going on worldwide, but until that research translates into a treatment, it says nothing. People want treatment". I know that sums it up for many on this board.

While it may be wishful thinking as he is managing director for Narcoms, I thought it was interesting that Dr. Fox thought in the next 5-10 years, treatments will be available that can "fully control the progression of MS". I truly hope he is right. It is a big statement for him to make. It would be amazing if it became a manageable disease for those diagnosed in that timeframe.

I also hope the research can find some repair aspect as well, for anyone who has progressed already, whether low or high level disability. I know it is another area of research.

[JerryD]

So, ( my snarky comment follows) the venerated Dr. Fox says to 'wait and hope' for answers. While we suffer disability; stress, pain and anxiety. It's easy for him to say. It's easier for me to be flippant! lol I will just be waiting for the end of the gravy train. Treading water all of the time !

[rdmc]

Hey Kathy,

I fill out the survey when they notify me through an email.

I'm not especially a fan of their publication. I do enjoy reading about the trials.

This past issue highlighted Progressive MS. I found this excerpt interesting, yet disappointing. It shows how far there is to go to "help" progressive patients. They don't even know how to measure positive outcomes of a trial.

"Dr. Fox also points out that despite the effectiveness of MRI in relapsing-remitting MS to diagnose and monitor changes, “new lesions are uncommon in progressive MS. And so we need to have a different metric, a different measurement stick of what therapy looks potentially promising,” he said."

I'm a little jaded when it comes to their publication, it usually is a "normal" MS publication, but I will give them credit for at least devoting a lot of this edition to Progressive MS.

[pennstater]

jerry - understand, treading is awful tiring

rdmc - I like the publication more for the statistical updates not necessarily the articles. It is one place trying to understand patient's progression, with or without DMDs. at least someone tries to quantify self reported symptoms.

And to both of you, I do hope they begin to understand progressive is better. since the one study showed (NMSS publication) why DMTs don't work for progressive (that immune cells pass to brain barrier in progressive and remain in blood and lymph systems in relapsing), I am hoping some doors have opened for research. I know, more treading, and more and more people are in the same sea. I just have to keep hope that some day, all can swim to land and walk, skip, or run wherever the are heading.