Four Months Post Infusion

I've had a few rough days in the past couple of weeks, mostly due to trying to do things past my current limits. Overall, my symptoms are about the same from day to day, but do have spikes here and there. For example, the last week, I'd had issues with back pain, which is probably more related to the multiple back surgeries rather than MS. I've also been battling with fatigue again. Yesterday, I fell in the driveway trying to load up my car, and last Sunday tripped and fell after tripping over the hitch on my car. It's more damage to my ego, as I've never been this un-graceful before. I have a few bruises and scrapes that will now take much longer to heal than normal. I'm hoping that I can get through the next month without further degradation of my health. I am looking forward to the next infusion cycle.

I've made a couple of changes to my tracking spreadsheet. I've removed a couple of columns from the calculation of the graph that I've been posting. Knee pain was removed, as this was due to a specific incident where I fell down the stairs and spraining my knee. It is not a symptom of MS, but a result of it. I also removed back pain, as this is most certainly due to my back surgeries, not MS. I also removed typing, as this is redundant with the column of right fingers dexterity.  So now the average is a calculation of 17 categories versus the original 20. This may change in the future, as I'm starting to think I need to track a few new symptoms as well.

If I think about how I feel now compared to a year ago at this time, or even at the start of this study, I would say that my condition has worsened.  Although the tracking numbers show a slight improvement, I think that this may be slightly skewed due to the fact that I'm getting used to my issues.  I can still walk fine, but in limited distance depending on the day.  I can still go up and down stairs, but with effort.  I can still drum an play piano, but with limited speed on my right hand.  I've altered my driving, and usually use my right hand to help lift my right leg when needing to get to the gas pedal, and now brake exclusively with my left foot.  I've made adjustments, and given up on all of my previous sports hobbies like wakeboarding, snowboarding, and kiteboarding.  I've replaced them with activities that I can do in moderation, like photography.  Luckily, my dogs are older now and need less exercise than they used to, as I cannot walk or run them like in the past.  

I've dealt with a ton of stress in the past few months, which doesn't help the symptoms either. However, I've accepted the fact that only I can control how I view the future, and even in times where I started getting worried specifically about MS, I'm hopeful that Ocrelizumab will prevent the condition from getting worse and start to make it better. Even though the direction I thought I was headed has changed, I won't let MS be the driving force of that compass.

Three Months Post Infusion

I actually had a good MS day today.  I was at a conference this week, and did a ton of walking.  I believe that some of my recent improvements were due to steroid regimen, as I knew that I would be over exerting myself the entire week at the conference.  I did end up using my cane every day that I was there because of some extended walks.  I have a feeling that I will probably have some difficult days ahead as that is the normal pattern.  It is 3 months post infusion, and the trends on my chart look to be improving.  I'm not sure if I am scoring myself differently due to the fact that I'm just getting used to my symptoms, or if they are actually slightly improving.  I have had some difficult days, but overall I feel fairly stable.  I verified with my Neurologist today my next MRI, Blood test, and Infusion Schedule.  I hope to see continued improvement, or at least stabilization.

I also recently bought a fitness tracker.  I went with the Samsung Gear Fit 2, as I liked the color screen and features best with this model.  The goal was to start tracking my steps and sleeping habits.  I set a goal for myself to walk 4,000 steps each day, and have met that more than I thought I would.  It also has the ability to track heart rate, water intake, and connect to my smart phone for notifications.  I can tell that my legs muscles have weakened considerably, and atrophy is noticeable on my right leg.  My hope is that the fitness tracker will help motivate me to stay active, and increase my muscle strength in my legs.

As far as Ocrelizumab, I still have no idea if it is working or not.  I look forward to the results of the next MRI to see if there are any changes.  My improvements could be weather related, or just fluctuations in my symptoms.  I'll keep tracking my progress and check in next month.  :)