One Month Post 6 Month Infusion

So, I'm getting a little worried and discouraged. I am trying to maintain a positive attitude, and know that this will take some time. It's hard when you hear stories about others on this drug who have had success with reduced symptoms.  Unfortunately, mine continue to get worse. It's winter in Wisconsin, and luckily, we haven't had really any snow this year. But the cold gets to me. I am deteriorating, and struggle to walk distances without significant effort. I went on a trip to Texas a little over a week ago for work, and walking through the airport was a real struggle. I'm suppose to go on a few more trips in the next few months, and have second thoughts on doing them due to all the walking required. I'm even having issues typing this message, as my right hand no longer wants to cooperate as I type. I don't really care what people think, but I now park almost exclusively in the handicapped spots. I need to use my cane if I'm not inside and can hug the walls. I struggle with stairs, so avoid them. I realize that so many are waiting for this drug to be approved, so I wish that I had stories of how this performs miracles.  For now, for me, it hasn't seemed to do much. I will continue to hope for a turn around, and see the progression of this disease stop. Being patient is really difficult, but it's the only thing that I can do right now. It's been one month since my 2nd infusion, which occurred at 6 months. I really hope to see some good things soon.

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.  :)

Post Infusion Improvement

I wanted to post an update with my improvements the day after my infusion.  I am assuming that this is only due to the steroid infusion I had yesterday.  Although I have used Prednisone in the past, this is the first time I've had it administered interveniously.  The biggest issue I had was not being able to sleep last night.  I didn't have trouble falling asleep, but was up numerous times throughout the night for extended periods.  Although my heart rate was normal, I was cogniscent of my beating heart while I was laying there.  When I got up today, I did see some big improvements in my walking and balance, and noticed that I didn't have the knee pain or soreness in my arms that I normally have. I also did not have any cramping or ligament stiffness today.  I don't think that this has anything to do with Ocrelizumab, but the steroids.  I wanted to post this so that people would know what to expect post-infusion.  I don't know how long this reduction in MS symptoms will last, but I'm happy to be having a great MS day.