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What are your thoughts on Clinical Trials?

A clinical trial is when a new medication or treatment option is studied with a group of people. Have you ever taken part in a clinical trial? If so, how was your experience? If you haven't, would you ever consider participating in one or not?

I've never taken part in a clinical trial. I have at times considered it. Particularly before I started my recent medication (Tysabri). There seemed to be a time when it felt like nothing would stop my progression and the seemingly unending stream of exacerbations I was experiencing. So my consideration was based on hoping to change my own experience with MS. My concern about clinical trials was never about the unproven medication I might receive but rather that I might get a placebo that had no medication in it at all. I know many would have the opposite concern.

My concerns for myself aside, I recognize that participating in clinical trials is something that helps the greater good. Clinical trials are an absolute necessity when trying to eradicate Multiple Sclerosis. I wish I could say I had the courage to put my own health aside to take part in one, but I’m not there yet at this point in my life.

So, what are your thoughts and experiences on clinical trials, whether you’ve participated in one or not? (And if you know someone that may have something to say about this, please direct them here!)

  1. I get desperate when I feel my symptoms too much, flare ups, attacks, etc. then I want to do it. Especially when it takes over mentally. I just can't be their Guinea Pig, I feel like that enough from everything the Dr.'s, neuropaths, and so on have tried to do for me since 2010. So over it. I get it Devin. Thank you for your article.

    1. Thank you , the concern of being a guinea pig is a common one, I'm sure

  2. Yeah, you are right. I just read on the National Multiple-sclerosis website how new study/finding showed the correlation between inflammation causeing anxiety. I hate the mental state this puts me in the most when I have a flare up. The anxiety is so agitating and makes me helpless. Just cry, get insecure, so numb and tingly, and panicky, I just sit on the couch from them tremors and feel bad that my husband and kids see me like this. Uuuugghhh. Sorry just needing to vent. You are never alone. So yeah I blabbed too much sorry. Just feel for you too, I get it.

    1. Hey , don't be sorry! ALways, always feel free to vent here! We ALL do it and need it!

  3. Awww man, okay, I appreciate that thank you. I will work on that. You are so right thank you again.

    1. Devin Garlit when I was diagnosed with MS I signed with Emory for clinical trials but so far no bites. There are not many drugs out there to trial for PPMS. I would not mind participating in one.

      1. i have ppms and I have been using ocrevus and I am doing well with this

      2. that's wonderful to hear. Thanks for sharing what has been working well for you. It's always helpful to hear what people are benefiting from, so thank you for sharing your experience!
        Alene, moderator

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