Tuesday, August 16, 2011

Reminiscing about Recapping...

I was just searching my blog for when it was that I regained the ability to jump and run (in short bursts, no marathons) and I happened on a post that listed my pre-trial symptoms and how I was doing at the one year anniversary of starting the TRANSFORMS trial for Fingolimod (now Gilenya).

I thought it was worth drudging it up again for anyone searching to see how I've done on the drug, so here goes:

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 or often 2 canes.
  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.
  10. 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.

So now, three years after that update as I approach the 4 year anniversary (8/20/11) of my start date, I can say the only things that have changed may be that I no longer have insomnia and the spasticity in my arms is totally gone and the spasticity in my legs is more of a morning stiffness which I may or may not have had despite the MS since I am *getting up there* in age.

I didn't really remember just how bad I felt getting into this trial. The mind tends to make us forget the lousier parts of our lives so reading that back over I was kind of shocked into a vivid memory and I can truly say that life with MS before this drug was pure misery.

I'm all for living a healthy life and trying to do as much as you can for yourself without the use of pharmaceuticals, but when you are up against a wall and suicide is looking like an option, drugs don't look so bad. Gilenya has my respect, gratitude and admiration. Without it, I can honestly say I probably wouldn't be here.

1 comment:

  1. Wonderful--as in wonder-filled. What a blessing this drug has been! And I am so happy for you.


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