Wednesday, March 10, 2010

CCSVI- It’s My Turn

(Photo credit: The Fayj)
“There are risks and costs to a program of action. But they are far less than the long-range risks and costs of comfortable inaction.”
John F. Kennedy

I've been posting here for a couple of months about a new theory of the root cause of MS, called CCSVI. I’ve spoken to, called, emailed, blogged, private messaged, posted on message boards, Skyped, tweated, and Facebook chatted with so many people. I did all this to gain a better understanding of the relationship between CCSVI and MS, and I did this to find out what my options were for treatment. I am happy to say that the time for talk is over, and the time for action is here.

I met a wonderful group of MS patients who studied CCSVI even more than I did. They put me in touch with a doctor who is forward-thinking enough to start diagnosing and treating MS patients right now. Most of the folks in this group have already been treated for CCSVI. Now, thanks to them, it’s my turn.

On Sunday, my wife and I will be packing up the wheelchair van and driving to a “far away” hospital to spend a week or so with Dr. X, an Interventional Radiologist and Chief of Radiology at a major hospital. On Monday and Tuesday the 15th and 16th, I'll be going through some diagnostic activities (MRV and Ultrasound). On Wednesday the 17th I expect to have a venogram and angioplasty (if warranted) on the veins that drain my central nervous system. No green beer for me on St. Patty’s day this year. I’m not exactly sure when I’ll be home- probably a couple of days later.

Dr. X asked me to keep his identity confidential, so that he is not inundated with requests that he cannot handle at this time. As soon as I am given the okay to disclose his contact information, I will.

Because many of you are interested in what I'll be going through with this experimental treatment, I plan to blog about the details of my experience on a regular basis -- hopefully at least once per day while I am at the “far away” hospital. 

Although I am very encouraged by the possible connection between CCSVI and MS, I have to be realistic about the chances that this will make a difference in my life. In other words, I am managing my expectations. This is how I operate. Others, in a similar situation, might effuse optimism. To each his own. Perhaps this will slow down or stop the progression of the disease. Maybe it won’t help at all. But one thing is certain. If I do nothing, then I know where this thing is headed.

For some basic information about CCSVI, and its potential relationship to MS, please read my previous posts on the subject.
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  1. My best wishes are with you on your journey! How great would this be to have a procedure to stop progression or better yet, give you your legs back.
    I am praying for you and everyone else afflicted with MS that there will be a miracle cure. Maybe this is it!

  2. Best wishes to you on this new journey.

  3. Grab the bull by the horns Mitch!

    Nice job digging so deep and finding the info you needed.

    Sure will be sweet if it helps!

  4. Do you have copy writer for so good articles? If so please give me contacts, because this really rocks! :)

  5. Best of luck Mitch. Go for it.
    Jim, Ontario Canada

  6. Mitch, I am so happy and hopeful for you. I can't wait to hear you use the term "progression" in a new light in your future posts. That is, your progression to a healthier, fuller lifestyle. Good Luck on your procedure and God Speed your recovery.

  7. Just wondering,

    Has Dr. X set up things up to formally track progress of all his CCSVI patients?

    Best of luck to you on this.

  8. Best of luck to you! I pray that all goes well and you start to get better. I have Secondary Progressive and have been following CCSVI, I've signed up for studies but have heard nothing. My neuro won't even listen to the possibilities. I'm still trying to find out how and where to get tested myself to determine if I even have CCSVI. I've got you bookmarked and will be stopping back to hear your good news!

  9. I'll be following your experience with great interest. I hope this turns out to be a good thing for you.

  10. Thanks so much for all the well wishes. To respond to a couple of comments/questions:

    Does Dr. X have a program set up to monitor patients? He does, but it is not on the scope of a clinical trial. This is exploratory work, but not funded to be a full fledged clinical trial.

    And yes, I would like to start using the term progression like most of the rest of the world does. Progress is supposed to be good, isn't it?

  11. Well here is wishing you positive "Progress"!
    Thank you for letting us vicariously go through this with you, we are all pulling for you and that has to be a whole lot of good Karma coming your way!

  12. Best of luck, Mitch. I sincerely hope this works. I'll be watching for your reports.

  13. You are a CCSVI trailblazer for progressive MS people- best wishes!

  14. I am so very happy & excited for you. I can't even begin to imagine how you must be feeling. Even just the possibility of improvement is a blessing for people like us with PPMS.

    Best wishes to you for improved health.

  15. Hi Mitch,
    Thinking about you, think you are very brave.
    Have a pleasant weekend.

  16. Best of luck Mitch. I'll be thinking of you all next week and looking forward to your updates.

    Besides the ultimate results, I'm curious what they find on your doppler, then MRV, then venogram.

    You've certainly done your homework. I expect A+ results :D

  17. Thanks again for all the well wishes. Packing up to hit the road tomorrow morning.

  18. I tried to call today to wish you luck. I'll try tomorrow. We're wishing you all the luck you can possibly have. Keep us informed.

    Love Carole and Clair

  19. You are so right Mich, how would you know if it would work unless you try it. I know so many people that were against my husband trying LDN 5 years ago, but yet here he is with no progression and almost all of his symptoms gone for this same time period. Amazing things can happen when you keep an open mind and use your own logic to weigh things out. Thanks for keeping us all updated, we wish you the very best. Aletha & Paul in Monterey CA.