Friday, September 19, 2008

By Special Request...

Here's a blog post, by special request of a newbie reader, recapping my progress over the last year of the trial:

Clinical trial start date: 8/20/07
Starting symptoms:

  1. Numb legs.
  2. Severe burning in both legs from knees down.
  3. Unable to walk the grocery store (used the electric cart)
  4. Walked with a cane.
  5. Unable to run, hop, jump.
  6. Severe panic attacks that necessitated use of Xanax as needed.
  7. Depression.
  8. Spasticity in arms and legs.
  9. Extreme fatigue coupled with insomnia.

  • Bladder and Bowel *issues*. That's all I'm saying.


  • (there may have been more symptoms but I forget).

    At one year anniversary:
    Change in above symptoms:
    1. My legs aren't numb, except occasionally if I overdo it (the numbness comes back slightly but goes away with rest).
    2. Same thing with the burning -- only upon overdoing it.
    3. I can walk the entire grocery store and even PASS other slow pokes while doing so.
    4. I do NOT use the electric carts or the blue parking spaces.
    5. I don't know where my cane is.
    6. I can run across the yard, I can hop on both feet or either foot, I can JUMP!
    7. I haven't had any Xanax in at least 11 months.
    8. I'm no longer depressed. (I never took any medication for it either).
    9. My arms and legs still have some occasional spasticity.
    10. I sometimes take naps in the afternoon -- getting fatigued if I eat too many carbs at lunch.
    11. The insomnia thing I still have some trouble with. Some nights I fall right to sleep, other nights I go to sleep and wake up a few hours later, and some nights I don't fall asleep until the wee hours of the morning. It all depends. I adjust my naps accordingly.
    12. Thank God the bladder and bowel issues are over.
    13. Anyhow, that's the difference between now and then. Just last night when I was over at my Mom's house, we were all reminiscing about what I was like back then and their perceptions of the changes are even more dramatic than my own. This FTY720 Fingolimod trial has been instrumental in my breathtaking progress toward wellness, in my opinion. By coincidence, I got this link in my alert email today about Fingolimod: Stu's Views Article on Fingolimod Also, I was diagnosed in 1999 and have had at least 2 relapses per year since then. From 2005-2007 I had relapses every 3 months, with a recovery period of 3 months. I was basically suffering all the time. It has now been (drum roll please) SEVENTEEN MONTHS WITHOUT A RELAPSE!! Needless to say, I am a true believer. BTW, Cheese, this isn't the funny post I promised. It's coming tho. I have a draft I'm working on. Anyhow, thanks to all my readers -- old and new -- for following along, and this concludes the "Because You Asked" section of my blogging day. I will now return to my self-absorbed musings that try to be funny.

    6 comments:

    nns said...

    Hello! My name is Daniela, I'm Portuguese and I also have MS. Does your doctor give you any idea of when the medicine will be available? I can't stand anymore needles! Right now I'm feeling really tired and just want to give up. I’ve heard about Laquinimod and Fingolimod as the new promises for MS but I don’t know much about them.
    Thanks for sharing with us and light up our hope! Good Luck!
    d

    TickledPink said...

    Hi Daniela!

    From what I hear, it could be as early as late 2009 or 2010.

    I know you hate the shots, but it won't be long! There are several drugs that will be bursting onto the scene in the next few years that promise to revolutionize the treatment of MS.

    I'm proud to be a trail blazing part of all that. :-)

    BRAINCHEESE said...

    Hon, even when you're not TRYING, you tickle my funny bone!

    I will wait patiently for the return of your Muse...LOL

    Linda D. in Seattle

    Bubbie said...

    I am not easily impressed, but I find that I am with you, your blogginess, and your results with fingolimod. Thanks for sharing.

    Buttonec said...

    I'm in the same trial, it's been incredible. Not only have I been MS symptom free, despite having a lowered immune system (I don't know if they showed you your blood work results yet, but my immune system is insanely low) I haven't even had a cold or a flu in a year and a half.....

    I blog too
    www.buttonyourlip.blog.ca

    SKblog said...

    Thank you. Just what the doctor ordered! My history and progress has been almost identical although I haven't yet attempted to run or hop. I can, though, walk the heel-toe-heel-toe line, which may come in handy if I ever get pulled over. Thanks again. The newbie.