2 posts tagged “relapses”

How Social Media Is Changing Research (Part I): A Guest Post by MS Clinical Trial Participant and Blogger Jeri Burtchell

Posted September 12th, 2012 by

Today’s guest post is written by PatientsLikeMe member Jeri Burtchell (TickledPink), who has been living with multiple sclerosis (MS) for 13 years.  A tie dye apparel store owner and mother of two, she writes a blog entitled “Gilenya and Me:  My Story of Being an MS Patient, a Hypochondriac and a Guinea Pig.”  Her patient advocacy and social media presence led to her being invited to speak the Disruptive Innovations conference taking place in Boston this week.

MS Patient, Blogger and Activist Jeri Burtchell (TickledPink at PatientsLikeMe)

One rainy day in April 2007, I was lying in bed, staring at the ceiling, talking myself out of suicide. I was having another MS relapse. This time it was attacking the part of my brain responsible for controlling emotion. As a result I was having panic attacks almost daily. Along with the emotional issues, I was also having trouble walking and horrible spasticity.

I had been diagnosed with MS for eight years at that point and, although I was on one of the FDA approved treatments, I was continuing to relapse three to four times a year. It felt like standing in the ocean; every time I would stand up and catch my breath, another “wave” of MS knocked me back down.

Deciding against suicide, I made some proactive choices that led to my meeting with the lead investigator of the Fingolimod (now marketed as Gilenya) clinical trials in Jacksonville, Florida. At my first appointment we discussed the Fingolimod trial called TRANSFORMS. I took the informed consent document home and went over all the risks and benefits with my family. After extensive baseline testing, I officially started the trial on August 20, 2007, a.k.a. “Randomization Day”, when I received my first dose of medication. I would return for regular testing many times over the next several years.

Joining the trial changed my life. I was very fortunate that I did not suffer any major side effects, and I am happy to say that my last MS attack to date was the very one which led me to contemplate suicide that day in April 2007.

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I was fascinated by the research during the trial. They did a lot of testing, and I have never felt more assured that my overall health was being tracked, observed and cared for as I did in the clinical trial. Since I did not have medical insurance, this was a plus on top of benefits I might be getting if on the real drug.

When the trial began, I wanted to know what to expect. I tried searching the Internet for a clinical trial from a patient’s perspective and could find nothing. I decided to share my experience with the world so others considering a trial might have their own fears put at ease. Thus my blog, www.gilenyaandme.com, was born.

I blogged all of my checkups and along the way something unexpected happened. Many people wrote to thank me for being the reason they felt able to overcome their own fears and join a clinical trial. We began connecting and sharing our personal experiences in a way only the Internet could enable.

Read Part II of Jeri’s guest post!


A Peek at the March Newsletter for Members

Posted March 27th, 2012 by

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our March edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today

MONTHLY MUSINGS

Flare.  Exacerbation.  Attack.  Acute episode. These are a few of the different terms used to describe a multiple sclerosis (MS) relapse—which can last anywhere from 24 hours to several weeks to even months.

MS isn’t the only condition that has exacerbations, however.  This pattern is also common with fibromyalgia (FM), rheumatoid arthritis (RA), psoriasis, IBS, depression and more.  Just check out all the threads tagged with either “flares” or “relapses” across the forum.

A Quote from a PatientsLikeMe Member Regarding Her Personal Coping Trick:  A "Bad Day Box" of Favorite Items

How do you get through an attack?  In a recent discussion in the MS forum, suggestions included lots of rest, watching movies, a pinch of good humor, letting go of guilt, accepting help, pacing yourself, having easy-to-prepare food on hand, talking to your doctor and trusting that “this too shall pass.”

And in the FM forum, one patient has shared her unique trick: a “bad day box” full of uplifting items.

Got your own coping techniques?  The forum is all ears.

Kate, Emma, Liz, Jeanette & Sharry

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JOIN THE CONVERSATION

What’s happening in the forum?  Check out some of the recent threads about flare-ups below.  Then jump in with your own questions and answers.

Need help with something on the site?  Visit the PatientsLikeMe Site Help Room for answers from veteran members.

LABS, LABS AND MORE LABS

One of Many Labs You Can Add to Your PatientsLikeMe Profile

Things have gotten a lot more lab-tastic at PatientsLikeMe. Thanks to your requests and suggestions, we now offer some 200+ labs to help you monitor your health conditions.  Here’s a sampling of some of the new labs and tests you can add to your profile:

Wondering about another lab?  Search for it here.