Let me first address the fact that it took an hour and 45 minutes to get into the city for my check up. That means I’m doing nothing for all that time. I was her first appointment that morning. When we do my neurological checks and timed walking, I’m at the best I’m going to be. Therefore the check up is based on this point. However how realistic is it? This is the first time I was her first appointment, usually I’m her last. Either way, I was sitting for over an hour in the car. The reason I’m saying this is because right after the appointment, I was dropped off and ran an errand. I just needed to go in a store and make photocopies and it wiped me out. I can’t remember the last time my legs fatigued THAT fast. When I got home, I was so fatigued, I pass out on my couch. Yet, at the doctor, it was said my legs are doing good, they are stable if not even showing slight improvement. In the last year I can’t remember a time feeling that depleted, that suddenly and that intensely. However once again the doctor sees my best, never my worst, so how realistic are these check ups?
When I go to the neurologist now I have to mentally prepare. I’m at the stage where you tell the doctor, “I don’t feel good”, but they have nothing to make you feel better. It’s a pretty awful feeling. It’s not unusual for me to be depressed after I go to the doctor. There’s no cure for MS. So you go, list your complaints, and your maybe given a pill to hopefully alleviate a symptom. Other than that, there’s nothing else that could be done. I was really mentally prepared this time for the doctor. I wasn’t prepared for that little errand to do so much damage. So it really did set me off for two days. Anybody who reads my post from yesterday, you can see the anger and frustration, which all stemmed from the doctor’s appointment.
As far as changing to Ocrevus (Ocrelizumab), this was decided to be done. One of the big difference I learned between Rituxan (Rituximab) and Ocrevus (Ocrelizumab) is that Rituxan dosage is every six months once than two weeks later a second dosage. Ocrevus is once every six months as well, but doesn’t require a second dose two weeks later. The dosage given in the first treatment is higher. The infusion side effects are the same as Rituxan and you can read about them here https://www.ocrevus.com/.
I did learn about MRI’s in MS patients. When the doctor wrote me the night before, “good news I was stable”, I didn’t understand how that could be when I don’t feel as good. That confusion lead me to this post https://multipleexperiences.org/2017/04/04/an-mri-rant/ but I did get an explanation I wanted to share. The doctor explained that there are no new lesions, as there shouldn’t be, being that I’m on Rituxan. No new lesions is why I have no new symptoms. She explained that as far as progression goes in secondary MS, to see really the progress you’d need to take a microscopic look at the brain. The gray matter, which is really where the disability lies, atrophy as time goes on. Actually everybody’s brain does as time goes on. In MS patients, the brain is atrophying faster in those grey matter areas, hence causing more disability. So basically as this gray matter shrinks my current symptoms that I already have worsen. That’s what secondary progressive MS is on an MRI.
I apologize for this long ass post. I would’ve broken this post in two parts but my blog went down yesterday so I wrote it all today. I hope someone got some good information or at least a good read.