Tuesday, September 25, 2012
I've been on Fampyra (which, hopefully, will help my walking) for one week now. In about a week I should find out if I am one of the 1/3 of MSers who are helped by Fampyra. In my first week I had one day of side effects (flu-like symptoms without the upper-respiratory symptoms, muscles hurting, upset stomach), but since then appear to be OK. It's a little hard to say because I have been suffering from a mild flu or cold for a couple of days, which I assume is the real thing, not side effects. Now I wait for another week to see if I am one of the lucky 33%.
Tuesday, September 18, 2012
I've just taken my first dose of fampyra, a drug that may help my walking. The first few days may be a bit tough (dizziness, etc), but was advised that if the side effects aren't too severe (things like difficulty breathing and seizures), then I should tough it through for a couple of weeks until the benefits show up... if they do. So I decided not to do my swimming tonight, since a pool isn't a great place to have seizures or breathing difficulties. Other things about fampyra: it MUST be taken on a completely empty stomach and it MUST be taken exactly every twelve hours (so as to reduce the risk of those seizures). The "exactly every 12 hours" things sounds simple enough until you actually start trying to figure out the best time to do this for every day of the week. I did try another drug recommended by my neurologist, Baclofen, for my spasticity, but one half of a tiny little pill caused me to be dizzy the whole next day so I stopped that. I hope it wasn't just a flukey 24 hour bug that hit at the same time because my spasticity is certainly getting worse and it would be nice to have something to help with that. So now I wait for the side effects...
Thursday, September 13, 2012
I had a long session with my neurologist on Monday. Besides the usual list of symptoms and status I gave her, we talked about a couple of new drugs to try (as mentioned in my previous posting) given my current symptoms. I'll also be seeing someone about improving my gait, and given the narrowing in my lower spinal chord, she is going to refer me to a neurosurgeon to get his/her opinion. Between that, my gym exercises, swimming, biking, the AXON program at UNB and (newly started) Yoga, I'm keeping myself busy. Good thing I'm retired.
One of the things my neuro had me try was Baclofen for my spasticity. I took one half pill the night before last (you're supposed to start real slow, and yesterday was awful... I was dizzy and cog-fogged all day, tired but keyed up, even a bit nauseous for a while. Needless to say I am no longer on Baclofen. The next thing I try is Fampyra (for mobility). I can expect some side effects with that, but most of those go away after a couple of days so its worth sticking with it for the two weeks of the trial to see if it will help. Tomorrow I go to get fitted with a leg brace. I'm still going to try the Walk-Aide some more, but it needs to be re-calibrated and, in any case, there are places where the Walk-Aide just doesn't help.
Tuesday, September 11, 2012
Friday, September 7, 2012
Given how poorly MS is understood, these misdiagnoses are not that surprising: Oregon Health and Science University Study.