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:
- Numb legs.
- Severe burning in both legs from knees down.
- Unable to walk the grocery store (used the electric cart)
- Walked with a cane or often 2 canes.
- Unable to run, hop, jump.
- Severe panic attacks that necessitated use of Xanax as needed.
- Depression.
- Spasticity in arms and legs.
- Extreme fatigue coupled with insomnia.
- Bladder and Bowel *issues*. That's all I'm saying.
At one year anniversary:
Change in above symptoms:
- My legs aren't numb, except occasionally if I overdo it (the numbness comes back slightly but goes away with rest).
- Same thing with the burning -- only upon overdoing it.
- I can walk the entire grocery store and even PASS other slow pokes while doing so.
- I do NOT use the electric carts or the blue parking spaces.
- I don't know where my cane is.
- I can run across the yard, I can hop on both feet or either foot, I can JUMP!
- I haven't had any Xanax in at least 11 months.
- I'm no longer depressed. (I never took any medication for it either).
- My arms and legs still have some occasional spasticity.
- I sometimes take naps in the afternoon -- getting fatigued if I eat too many carbs at lunch.
- 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.
- Thank God the bladder and bowel issues are over.
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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.
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.
Wonderful--as in wonder-filled. What a blessing this drug has been! And I am so happy for you.
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