medical MS

New medicine

I’ve been happy with the Tysabri infusions for my MS. They seem to clear my head and give me more energy. Tysabri’s primary goal is to prevent new lesions and relapses, the other stuff is just a bonus. So that’s been going pretty well, we’ll see if it has stopped new lesions from forming when I get my next MRI’s done. In the meantime, I’m still having issues walking around…

I had originally gone to the neurologist in order to get some medicine to help strengthen my legs. People had been repurposing a drug that was designed to help people overcome opiate addiction for this. It’s called 4AP and has been around forever. There are very few side effects and you can get generic versions for pretty cheap. There’s a bit of a catch though. The dosage for MS is so much lower that you can’t reliably break pills to get accurate dosages. So you have to go through a compounding pharmacy. The other thing is that since it wasn’t cleared by the FDA for use with MS, insurance wouldn’t pay for it.

Well, a company went ahead and did the clinical trials and came up with a time release formulation. It got approved by the FDA under the name Ampyra. It is tremendously more expensive of course, someone has to pay for all of those licensing fees and clinical trials. I have decent insurance, so my co-pay i just a little lower than buying the generic, but the insurance company is paying a fortune for it. And people wonder why our medical costs keep going up…


Anyway, I’ve only been on it for a couple of days but I can already feel some positive effects. My legs don’t have as much jelly in them and I have a lot more control over my feet. I can now shake the water off of them when I get out of the shower, haven’t been able to do that in a while. I also feel more of my legs as well. I can actually feel them burn a bit when I go up the stairs, my muscles were pretty much numb before. Of course that also means I can feel pain in them better. I strained my right quad a couple of weeks ago. I have been feeling it tighten up and get weak on me, now I can feel the pain. I had a particularly viscous cramp in my left calf the other night, it has been smarting since, but now, OW! So, progress? I think so. I am walking better, and I’m hoping that with some feedback from my legs I can now improve my strength.

One other thing that has happened is that I have more energy. My first day back at work was pretty bad. I had been feeling run down over Christmas, wasn’t much of a conversationalist and had no energy. I only lasted 2 hours at work before I gave up and went home. A pattern has developed where I feel pretty run down in the week leading up to my Tysabri infusion, I figured I was looking at a long week until I got it. The Ampyra seems to have helped considerably. I can’t think of any other reason for my, for lack of a better word, feeling normal these last couple of days. So I am cautiously optimistic. Modern medicine is amazing, I sure am happy to be living in times like this!

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