One Month Post Infusion

Not much change on this end after the last infusion.  I was in the hospital one week after the infusion to help battle a relapse, but as of today, I'm pretty much back to where I started.  I am battling terrible fatigue, and am walking very slow today.  My balance is way off, and I'm having trouble walking without a cane.  I wish there was better news, but it doesn't look like Ocrevus is stopping the progression of MS with me.  :(

In Hospital on a Holiday!

Happy 4th of July. I'll be enjoying America's birthday by getting a steroid infusion of Solu-merdrol.  Actually, today is day 2 of 3 for the steroid infusion. The doctor yesterday said that I should be able to start seeing the effects of the steroid after the 2nd infusion of 1000mg. The hospital staff is very nice, but asks for my birthday a million times a day, and want me to notify them every time I have to go to the bathroom so they can stand outside the door. I'm getting a lot of ipad time while sitting in this chair, so I thought I'd update the blog. In addition to the infusion, my neurologist ordered an MRI of my spine yesterday to review.  I was in the MRI machine for just over 2 hours, which got a bit uncomfortable. They asked what kind of music I liked, but then never actually played anything. I don't think that this hospital visit is part of what's covered in the CHORDS trial, so it will most likely go on my insurance. If so, I'll ask for copies of the MRI.

The hospital food is very bland, but I have good options. I'm in pretty good spirits, but am a little skeptical that even the steroids will do anything to help.  I've also seen on a few of the Facebook groups that people get this infusion from their doctor's office.  It would have been nice not to have to stay overnight in the hospital, as it seems excessive, expensive, and unnecessary.  I'll be sure to ask the next time I see my MS Nurse.

One Week Post Infusion: Relapse

Not really what I was hoping for after my latest Ocrevus infusion.  Unfortunately, the past week has been extremely challenging, and my MS symptoms are worse than ever.  I went back to the Neurologist today and had a full exam.  My EDSS score was 6.5 today.  On my walking test, I was told to stop after 7 of the 10 laps because I was so slow and struggling.  My doctor gave me the option of checking into the hospital today, or waiting until Monday.  Without any way to make the proper arrangements for my dogs, I chose to wait until Monday.  I have Tuesday off for the 4th anyway, so go America.  You know it's bad when your boss asks you point blank when you're getting a scooter.  I suppose that it's inevitable, but hoping that the steroid next week will help.  Sounds like I'll get 3 days in a row with 1000mg of solumedrol.  I'm supposed to go on vacation at the end of next week, so I'm concerned if these symptoms don't lessen.  

Symptoms Worse, EDSS Better???

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

4th Infusion: 2nd Full Dose after two 1/2 doses.

Over 6,000 Steps and Falling Down in Front of Hundreds of People!

I went on another business trip this week to Denver. On the way back, we got to the airport plenty in advance, so I decided that I would take my time and walk to the gate. I got through security fine, but started to struggle once I got to the terminal I was in. Long story short, I tripped and fell in front of no less than 200 people waiting for their flight.  An number of people came to assist, which was nice. I ended up taking a skycap the rest of the way to my gate.  This whole "not being able to walk" thing is really starting to get annoying. I am going to fight as long as I can to not put myself in a wheelchair, but I think that it will be sooner than later.  :(

The good news is that I did have over 6,000 steps that day.  I normally track about 2,300, so I was well above my average.

***  I tripped an fell backwards at the gas station today.  So that is twice in a week.  This sucks.

MRI & Blood Work

In one week, I'll go in for my 3rd infusion. Technically, it's my 4th infusion, but the 1st one is split up into 2 different sessions. I had my MRI today, along with the blood work in preparation for the infusion. I know that a lot of you are excited to try out this drug, and have read all the stories on how it's a miracle cure. Unfortunately, that has not been the case for me. My symptoms have progressed significantly in the past 6 months, and I'm not nearly as hopeful as I was going into the Ocrelizumab trial. The nurse at my neurologist's office said that acceptance to the trial I am on is now closed as of a few weeks ago. I will talk it over with my Doctor next week, and will probably give myself another 6 months on the drug before even talking about switching to something else. Although frustrating, I am still grateful that I was able to try this before it was even FDA approved.  Just wanted other users to know that each patient is different, and results may vary.

2017 WalkMS Milwaukee