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GrammieP 
7:55am, August 7, 2009
I have a new friend who like me has MS. She is quite a bit younger than I am but she is just a joy to be with. She’s full of life, so optimistic and constantly smiling.
She is in a Phase 3 Clinic Trial for the oral drug Fingolimod or FTHY720. It is a worldwide trial with approximately 1,800 MS patients in the trial. The trial is 3 years. She is in year 2 ½. She somehow found out that she is on the actual drug and not the placebo and has had no side effects. She has had only one mild flare compared to the three or four per year that she was having.
Yesterday, she invited me to go to Dartmouth Hitchcock Hospital (affiliated with Dartmouth College in Hanover, NH) with her for her 3-month check-in. Her nurse practitioner, the nurse in charge of taking the data from the 25 people in this particular location, was a dream. I have never met such a wonderful, caring nurse. She took the time to explain the whole procedure to me and talked about the difficulties of treating MS. One of the things that is part of the trial is Sandy must walk 1/3 of a mile as fast as she can and it’s timed. I did it along with her only I didn’t walk as fast as she did. I was proud of both of us for being able to do it!!
She then met with one of two neurologists on the patient’s team. I thought she was 12 and she giggled and said she gets that a lot! Anyway, she was given a complete neurological work-up including looking at her optic nerve. Geez, I never got that kind of work-up from any of the four different neuro’s that I’ve seen.
She finished up, got the medicine and off we went. I am so hopeful that this drug makes it to the market, although it will be at least a year or two before that happens.
I can’t tell you how impressed I was with the whole team. If I wasn’t moving, I would switch in a nano-second. Apparently all of the neuro’s at the MS Clinic at the hospital are great! Sandy said she has never met one she didn’t like.
All in all it was a phenomenal experience and a great day.
Till later … ooxx
Comments
WOW! What a cool experience that must have been! I used to have a great neuro at the Cleveland Clinic, but when he moved to Boston to head up an MS Clnic, I was left with a neuro I did not like... Dr. Kinkle (maybe Kinkel? no, that does not look right...) was great with a handle bar mustache (which he got rid of in the end of our relationship...
Having a great neuro is so important with MS and at the CC, they also used a team approach. My new MS Clinic does the same thing on a smaller basis as they are so much smaller, but my neuro is great again! (Of course, I've had so many that finding a good one is so important! I know!!!)
Have a great weekend Marti!! xoxoxo Cj
ddeadred
I am so glad you experienced that. I too was in a 3 yr. study for Copaxone and I was actually taking the drug and not the placebo.. I also did it at Dartmouth Hitchcock in NH.. and did the walking thing.. They were very nice to me but I found a nuero closer to home here..I am so happy you met her..Hope your enjoying your weekend Marti...xo Mary :-)
muc7452