Toni Pinner


Toni Pinner

You never know how hard it is to write about yourself until someone asks you to do so. Where do you start, stop and what to put in between?? Ok – first the easy stuff. I’m married and have 2 sons, 4 cats, 1 grandcat and a granddog.

But, I’m choosing to start my story with how I discovered MSWorld back in May 2009. I had signed up to become an MS Advocate for the State of Illinois after doing my very first MSWalk. I then received an email from the Illinois chapter of the NMSS. Included in that email was information about this website called MSWorld that had live chat and message boards. Hmmm. Maybe worth checking out!  And here I am!

And why did all that take place? I was diagnosed with RRMS 12/16/00. I’ll never forget those words when my doctor looked at me and said “you have MS” What??? No way!!!!! Impossible!!! I don’t have MS……………. 32 seconds later it sunk in. I have MS. As with everyone else that has a story to tell, it has been a journey full of ups and downs. Doctors, tests, MRI’s and more tests – just to make sure. I had a bit of a difficult time trying to find the very right Neuro that I thought I could trust, and talk to about anything. Well, 6 Neuros later I have found that perfect Dr.  Even though I live in Illinois, I am very close to the Wisconsin border and have chosen the University of Wisconsin at Madison. It is an awesome facility, with wonderful staff that are always there for me. So as long as my Neuro continues to practice (he is never going to be allowed to retire) we will continue the trek up to Madison. Through the years we have discovered that I did not tolerate the injections well at all. Avonex, Copaxone and Rebif – all thumbs down. Options had almost run out when my doctor presented to me the option to become a part of a new clinical trial for an oral MS medication. One of the very first of it’s kind! So back to more testing, more doctors, MRIs, CT scans, Opthomology I joined the trial for the drug that is now known as Gilenya. I feel blessed that I was able to be a part of such an important step in MS Research. Not only for me, but more importantly for all of the other MS patients that just can’t handle the shots

So back to MSW –  I remember the first time I went into chat and was welcomed by an enthusiastic, friendly group of people. It was so easy to settle in and join in the fun!  In 2010, I was sort of “ambushed” by a couple of OP’s in the annex one evening and asked if I would be interested in joining the volunteer staff as a chat host! Who me???? Sure why not! It has been an amazing opportunity to give back to the MS Community through MSW. And it got even better when I was asked to become a member of a newly formed Chat Administration team. A huge honor in my eyes! And as if things could not get better, I am now also the Volunteer Co-ordinator for MSW. I just hope that I can continue to keep giving back and making more and more new friends here at MSW!!!!