I have been tracking my symptoms since I started in the trial. I have made a few adjustments, as what I thought was bad last year, wasn't nearly what I anticipated. Interestingly enough, even though I added additional issues to my EDSS interview, my score got better from a 4.5 to a 4.0. I know for a fact that my MS symptoms have gotten significantly worse in the last 6 months. The good news is that there are no new findings on the MRI. However, my good and bad days have been pretty erratic. You can see from my tracking worksheet that I've had some pretty bad days. I'm not sure how long I'll need to wait to see if my situation gets worse, but I'm committed to finishing out the study for now. Today, the day after the infusion was very challenging. After the 1st infusion, I rebounded pretty well due to the steroids. Not today. I really struggled, and even fell hard tripping at the gas station today. I had my dad in town helping with yard work, and felt helpless that I couldn't do anything. I love the help, but hate the feeling of helplessness and being a burden on anyone. Don't get me wrong, I love seeing the others who are helped by Ocrelizumab, and hope that I'm just a slow learner. Now I wait for a few months to see how it progresses.
EDSS Score: 4.0
Hi Mike,
ReplyDeleteFirst, thank you for this blog. I read it all. I am crossing my fingers for you, in hope that this treatment would work well and help!
Have you seen others that participated also in the trial and it helped them quicker or improved their situation? Any references you could share?
We are looking for miracles in hope that those would indeed come and help us. Even partially. Even small improvement would be appreciated...
Thanka and good luck!
Hi Mike,
ReplyDeleteI'm so glad I found your blog!!! I am on a trial as well, just had my first half dose on the 27th of June (this week). I felt pretty good the day after as well, however the next two days my MS symptoms peaked and I thought I was going crazy. Now, while I have several lesions on my brain and spine, I score a 1 on my EDSS so I'm not as severe as you've gotten. I go in again on July 10th for my second half dose and am scared that it may be even worse for me. I don't have a lot of MS "experience" as I was diagnosed this year. I am happy to say that I do feel better today. :) I hope you have a good 4th! Stay strong!
Regards,
Kathy
Hello All,
ReplyDeleteI have been battling RRMS for 12 years, the only previous therapy I have been on is betaseron. I had my first two half doses of ocrevus. A month ago two weeks apart as prescribed. I believe that the solumedrol that you receive at the infusions give a lot of false positives as far as immediate symptom improvement. I feel since the steroids have worn off I've had some of the toughest symptoms days I've ever experienced in the entire 12 years of the disease. If ocrevus is an improvement in the available therapies, I hope I begin to feel some positive effects in the future, because this has been difficult so far.