Five Months Post Infusion

I went in today to get another MRI, as well as blood and urine tests before my next infusion.  While I was at the office, I also needed to sign a new consent form for the CHORDS study, as they've made some minor changes. My next infusion is January 9th, and I'm excited to continue on the study, but am somewhat skeptical at this point on how effective it is for me personally. I have had a rough month or two, and my conditions seem to be deteriorating. My overall symptoms have gotten worse, but I remain optimistic that this drug will do what it's supposed to do in the long run. I was in South Carolina with family over the holidays, so the change in weather was great. Now, I'm back in Wisconsin and had a challenging MS day today. Good news is that I have a 3 day weekend coming up to relax and watch some football.

So, I found out today that roughly 294 out of the 600 participants in the CHORDS trial have already received the drug. Apparently, there was a high number of people getting declined for the study, so they have loosened the requirements to get into the trial. Nothing changes for me regarding the study and how I get the drug, but new people into the study will not have as much difficulty. From my understanding, they will not do as many blood tests, and/or make some modifications to the ones they do do. They have also changed their stance on reproduction for men, as they were pretty clear that you were not to try for kids while on this drug. This has changed for Men, and they only ask now that if you do try and get pregnant with your partner, that they are notified and have a chance to monitor that.

On a side note, the WalkAide device that I was using stopped working about 2 weeks into testing it. Not sure if going to a different part of the country affected that, but I wasn't able to get a full month of usage, and am not sure if I'll try to buy one. I did see that people are selling used units online, and this may be a more economical way to get one.

Testing out WalkAide: Treatment for Foot Drop

FYI:  This post has nothing to do with Ocrelizumab, but is part of my treatment plan:

I had a prescription from my Neuro to go get a consultation for and AFO (Ankle-Foot Orthosis) or WalkAide, which can help MS patients with foot drop. I finally went into my local orthotics office to test both options. The AFO is basically just a carbon fiber brace that fits into your show and connects to your shin to prevent your toes from bending.  I was more interested in the WalkAide system, which is an electornic device that you wear that sends an electrical impulse to your foot each time you take a step. I have used a TENS unit and EMS for therapy after my back surgeries, and think that it basically works the same way, but localized to ensure that your foot is fully up by contracting the muscles.

The device is mounted using a brace above the calve muscle, and uses sticky pads to deliver the shock to the foot. You can change the level of intensity with a quick turn of the dial  I got a pretty good reaction from the device at about 3.5.  I was able to rent a test unit for the month of December to ensure that it would work for me. Initial results were very positive, and seemed to be walking at a faster pace.  It does NOT help with balance and fatigue.  After wearing the device for a few days, I noticed that I was developing shin splints, and it was almost painful to wear the device, so I'm taking a day off from wearing it. It also has an exercise mode, that will deliver shocks at a regular interval for like 20 minutes, just stimulating the muscles.  I will continue to wear and test the device for the rest of the month, and then report back here.

The biggest detractor is that this device costs about $5,000, and there is no guarantees that insurance will cover it. They even said that my insurance will most likely deny this, making it an out of pocket expense, even though it's a prescription by my neurologist. I decided to pay a $250 fee to rent the unit for a month, and used some FSA dollars that I'd lose at the end of the year anyway.  There are used models online that could save me some money, but not sure if I'll still be interested after using it a month. For more information on the walkaide system, visit www.walkaide.com.