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Saturday, September 02, 2006

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August 25, 2006
Value of Thymectomy In MG To Be Tested
A multinational trial to determine the value of removing the thymus as a treatment for myasthenia gravis (MG) has opened at some 70 centers in the United States, Europe and Asia.
Removing the thymus, an organ of the immune system located in the chest, involves a surgical procedure known as a “thymectomy,” and it has long been used as a treatment for MG, a disorder in which the immune system mistakenly attacks the parts of muscle fibers that receive signals from the nervous system.
But, until now, no systematic study has been conducted that measures what, if any, benefit there is for patients in adding thymectomy to standard MG medications, such as prednisone. This study is designed to determine whether thymectomy provides additional control of MG symptoms or reduces the amount of prednisone patients need.
The trial is seeking adults with MG who are between 18 and 60, willing to be randomly assigned to receive prednisone and a thymectomy or prednisone alone, willing to be studied for at least three years, and meet other criteria.
For details, see the study’s Web site at www.soph.uab.edu/mgtx/, or call Greg Minisman at the University of Alabama-Birmingham at (205) 934-4905.

Return to the Previous Page My thymectomy was performed in June of 1992. I never recieved any benefits from that we know of. I will be watching this research very carefully. I will never regret having the surgery done, because, while it was a dramatic surgery, it was done on the best research available at the time. To this day, if they told me that they thought they left a piece of the thymus, and if they went back in and took it out, I'd go into remission ... I'd let them do it. Largely, because at this point, I'd do anything for remission, but also, because, it just did not hurt THAT much, for THAT long in the grand scheme of life. At the time, Having your chest cut opened and seemed like a big deal, having 6 weeks of recovery time seemed overwhelming, but hindsight, it really doesn't IF it was going to offer me my future, or hope of my future. I do wonder, however, how much the thymectomy contributed to the severity of the costochondritis that I have. (that is blamed on the lupus).


  1. hey pk.. turn on your sound woman:)

  2. PK, This is all so interesting...Thank you!

  3. I wish you didn't have to go through all of this *stuff*.


  4. Wolfbaby ... I was yakkin with my brother in Florida ... like I told you I would be!!!!

    Wanda ... you're too kind.

    I'm afraid I'm boring everyone to death.

    Cathy, I'm afraid you're being too kind too.

    TJ .. it's worse in the telling than in the living. This weekend is more about educating, and raising awareness for Jerry's Kids than about me. It's just the one I know the most about. I'm adding my personal experiences so people can understand a bit of personal touches to it. So, while it's still just a blog on the internet, it will be more than just that story on the Telethon.

    MDA has brought us (especially me) soooo far.

  5. Thank you for the education Peggikaye...

    But I'll continue to pray for your healing so that you don't have to suffer so much.

    I hate it that you have to go through it all.

    As far as MDA goes... I've always tried to support them, albeit it has been in a small way.

    I'm glad that it is a good and forthright organization.

    I wonder about those things, you know?


  6. TJ ..thank you. I will take all the prayers I can get.

    Yea, it is good to know that organizations are doing what they are supposed to be doing.

    I'm watching the telethon right now, and Bj asked me if I remembered watching it several years ago with him from the hospital. Uh ...yea. This is a better place to watch it from!

    Jerry Lewis looks MUCH better this year than the last few years!!!!