Read all: I had some initial, temporary, dramatic results very shortly after starting Ampyra (brand name of 4-AP). Unfortunately, those dramatic results have tapered down immensely, but it was wonderful while it lasted! Initially, I had huge improvements in balance, leg strength, and feeling in legs/feet. I continue to have cognitive benefits from the drug, though that is not one of their claims. When I briefly stopped taking the drug a few months ago, I noticed much more brain fog. It improved immensely when I restarted Ampyra.
My brief history: SPMS, diagnosed in 2002 (first symptoms in 1999). Age 34, married with two kids. Powerchair since 2007 after a major spinal surgery for correcting flatback, though I can still walk short distances with a walker. Have had 7 total doses of Novantrone (mitoxantrone) in 2006, 2007 & 2008, as well as some use of Rebif and Copaxone at various times in the past for DMDs. Novantrone was a great choice for me, as it has mostly halted progression. I was able to walk before Ampyra, though for very, very short distances with heavy dependence on a wheeled walker. Otherwise I use a powerchair for everything inside the house and out. I still use the walker - this drug is no miracle cure as you can see from the video. But it gave me a lot of strength and balance back (of which many of those dramatic, initial benefits have since tapered off). During physical therapy, I can walk like this in the parallel bars, though I wouldn't try it unsupervised :)
See my walking video from 2007 listed below after being on novantrone - pre-major-spinal-revision surgery and pre-reliance on fulltime powerchair usage. I'm not back to that level of mobility with Ampyra, but it has still been a wonderful drug for me. Maintenance physical therapy has preserved a lot of my mobility. Thank goodness for an awesome insurance plan that covers it!! http://www.youtube.com/watch?v=hyapM_wTqxk
i was like that once
tboy221 1 month ago