This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
Documentation.....
So I have decided that if I am found to be a good candidate for the HALT MS study I think it would be great for all of us with MS to have some kind of documentation of the process. Of course the doctors will all being doing their own documentation for their studies and journals but how often do we actually get a patients point of view, what they are going through, how it effects them and in a way that we can read it and understand. I don't know about you but most of the clinical trials/studies that I have read are informative but pretty much just the facts...which is fine if you are a doctor or researcher, but as a person with MS you may want to know more...I know I would. So, I will let you all know very soon but if I am found to be a candidate I plan to document the whole process. And of course I think it is important to remember that with everything....each one of us are different. We may all have MS but we all have different reactions when it comes to how our bodies respond to various treatments. That is part of why it is so difficult to treat this illness....sure we may have similar symptoms or situations but we are all unique....they say no two MS patients respond the same. So now that I have given my two cents about that....
So this is where I am in the process. Last week when I saw my neuro I was referred to the study. Then the study coordinator called me and we started the whole process. I faxed over my release forms and the study coordinator left me a message yesterday to give her a call on Monday....they have already started getting my records in. So that is about it. Mainly paperwork and waiting at this point. As I find out more I will let you know.
Until then I hope this finds you doing well and enjoying your weekend. Take care! :)
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About Me
- Jaime
- I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).
MS Advocacy
MS Bloggers
MS Donations
MS Links
- Accelerated Cure Project for MS
- Allison Shaddy: MS & Your Feelings!
- Consortium of MS Centers
- Cure MS Now Research Fund
- Face of MS
- Heuga Center
- International MS Support Foundation
- Maureen Manley: Spirit in Motion
- Montel Williams MS Foundation
- MS Active Source
- MS Association of America
- MS Complementary & Alternative Medicine
- MS Foundation
- MS International Federation
- MSplus Foundation
- MS Watch
- National MS Society
- Race to Erase MS
- Rocky Mountain MS Center
- Top 10 Sources (I'm #3)
5 comments:
Please do blog your experience in the trial. That's what Jeri has done with "Fingolimod and Me" and she is now in the extension phase of the trial. It's great to hear real experiences.
I know you're just in the paperwork stage right now, but this is a big decision. I hope you have a great outcome with few side effects and even less discomfort. Let's hope it really does HALT your MS!
Good luck.
Love,
Herrad
Hi Jaime,
Just came by for the first time, very curious whether you got on the Halt MS Study.
Hope you are doing well.
Take care.
Love,
Herrad
hi Jamie.. I hope this study works for you! keep us posted on documentation :)
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