sturdyteam registered for MS Walk 2012

sturdyteam at the 2011 MS Walk

We are once again completing the MS Walk (in Edmonton again this year) to raise awareness of and funds for MS research and related programs. As many (most, all?) know, I was diagnosed with relapsing remitting multiple sclerosis in 2009. The disease initially affected my vision and balance. I have been on 2 different medications in the past almost 3 years, Rebif and now Copaxone. (both are injectable - I have written about this before). I have also completely overhauled my diet, fitness, and lifestyle. I won't bore you with the details, but many of the links on the side of my blog lead to other sites that are in line with my changes. Things have been going very well with only small bumps in the road (mostly from the medications themselves). I do not know for certain how much of this is due to the medications, other significant lifestyle changes I have made, or just luck. I guess it doesn't really matter in the grand scheme of things. Nothing sounds sweeter than people telling me that "they had no idea" that I had MS. I hope to keep it this way. Please consider sponsoring us and supporting this worthwhile cause. 

sturdyteam registered for the MS Walk 2011!

sturdyteam at the 2011 St. Albert Enerflex MS Walk

It is time to start building an increased awareness of multiple sclerosis and to start fundraising again as the 2011 MS Walk is only 2 months away (15 May 2011). This year, we are participating in the Edmonton Enerflex MS Walk instead of the St. Albert MS Walk because of conflicts with the girls' dancing schedules. Like last year, we'll be doing the 10 km walk. Please click here to donate to sturdyteam or our individual members.

I was diagnosed with relapsing remitting multiple sclerosis in May 2009. I am currently taking Copaxone, a standard MS disease modifying drug (DMD), via daily injections. Before this I was on Rebif for two stints, but it caused nasty side effects so I moved over to Copaxone (Glatiramer acetate is its generic name - Copaxone is the trade name used by Teva Pharmaceuticals).

Although there are many new therapies being researched and introduced all the time (here's a new pill-based therapy introduced in Canada just two days ago), my goal/hope is that research will be directed towards uncovering what causes MS so that people can avoid "modifying their disease" through DMDs and instead live a long, healthy life, free of MS. Here is an example of the direction I think we need to be pursuing more vigorously, especially the dietary suggestions that are in line with a Paleolithic diet (and related to a recent blog post of mine).

One way, or another

I started taking Rebif (interferon beta-1a) as a disease modifying drug (DMD) for treatment of my MS in July 2009. Injecting myself thrice weekly was no joy, but then again neither is the prospect of MS progression, so I learned to work it into my routine. Unfortunately, Rebif and I did not agree with one another. I came off Rebif in late November, and then back on it again in January 2010. That lasted only until about the end of March when I came off it for the second time, again because my lab work showed that Rebif was affecting my bone marrow and blood counts.

At this point my neurologist suggested I switch over to Copaxone (Glatiramer acetate) because it is not associated with the same side effects as Rebif (fever, aches, chills, headaches) and because it doesn't typically affect the same things that the interferon was affecting in my lab work. The downside, of course (there always is a downside) is that you need to inject Copaxone every day, not three times per week like Rebif, and Copaxone can cause skin irritation, lipoatraphy (damage to subcutaneous fat so that you develop "pits" in your skin) and it can cause muscle spasms if injected into or too close to a muscle.

I have had few to no skin issues so far, but this may happen in time. On the other hand the muscle spasms have been an issue when injecting my legs and arms because I have almost no fat to inject into (contrary to the training nurse who visited me a week and a half ago who claimed I could use an 8 mm injection depth on all sites - wrongo!). Using the automatic injector (autoject) in my legs and arms also turns out to be a nonstarter and part of the problem because controlling the depth of the injection is tricky. When the spasms start, your muscle dances as if it were hooked to a car battery and feels as if the meanest, biggest guy you know just gave you a charleyhorse. Then  did it again just for fun. The stiffness lasts through the next day.

The support nurse from Shared Solutions (who is very helpful) suggested that I manually inject at a 45 degree angle into my arms and legs to avoid the spasm issue. Two nights ago the injection into my arm was much better done manually than the previous night with the autoject, and involved much less swearing post injection. Other than some burning, all was basically fine. The manual leg injection last night was another story. I did not manage to get it into the tissue at 45 and the muscle was jumping before even half way into the injection. My SO couldn't watch it was so intense. Rah! I sent an e-mail to my support nurse and she suggested to dump using the legs and to use my abdomen as two areas to give me a total of 6 areas (abdomen X 2, butt X 2, arms X 2). Good call.