Doctor Day Dread

I don’t like “doctor day”.  I have one with my neurologist every six months, at least.  I had one today.  Although she is the best doctor I have ever had, has seen me through some really rough MS transition periods, and I like her as a person, I dread going to see her.  Though I live with MS and all the limitations it enforces daily, seeing a doctor specifically for the disease always brings the horribleness of it to the fore.

Firstly, I drove myself to the appointment, which required two days of vigilant rest in order to scrape enough energy together to do so safely.  I got home completely drained and, six hours later, I’m still sitting in the recliner exhausted.

My walking is worse so I get to go to physical therapy…again.  I’ve had P.T. several times over the last 30 years – something else to drive to.  It’s worth a shot though if they can help fix the hitch in my “get along”, causing pain in my hips and spasms in my legs.  I know I need to work on my balance and coordination, as well.

We discussed my bladder and the medicine change the urologist suggested – it’s always fun to talk about your bladder.  She said she wished there was something to do for the interminable, insufferable MS fatigue but it’s just part of it.  And, despite my trouble walking and the need for a cane, she said I’m lucky to still be able to walk after 30 years.  She said it’s likely due to the fact that I have dauntlessly exercised in some form or fashion nearly every day for the duration of my diagnosis.  Nearly all her other patients have moved to motorized wheelchairs this late in the game.

I’m going to get my next Ocrevus infusion the first of March, Lord willing.  My doctor told me to continue to stay away from people from now until four weeks after I get the medicine, after which it should be safe to get the Covid vaccine (if I can find one available).  As an aside, there was a lot of initial concern over whether Covid vaccines would be safe for people taking immunosuppressant MS drugs.  Thankfully, it has been deemed safe and, though they may blunt the full effect, they still seem to work their magic.

Seeing my neurologist is a reminder of all the fear and uncertainty that surrounds the future living with multiple sclerosis.  I wake up every day wondering what kind of day it will be.  Will I be able to walk?  Am I going to have enough energy to make lunch and dinner?  I try to take it one day at a time, and I usually succeed.  However, when I see the doctor I have to look back over the last six months or year and compare how I am now to how I was then.  The last several years, as the disease has slowly progressed, I see changes that are not pleasant to look at but over which I have no control. 

No one knows what the future holds, I know that.  It may or may not be as bad as I fear it could be.  I pray for a cure.  Realistically, I think they will have to figure out what causes it in the first place before there’s a cure.  It’s hard to win against an unknown, moving target.  So much more is known now than ever before and there are some solid theories about what triggers the onset and drives the progression of MS.  I hope I live to see the day when no one else dreads “doctor day” because of multiple sclerosis.

First Dose of Ocrevus Is in the Books!

I kept a running log yesterday of how my first experience with Ocrevus went. It was a long day for me, but it went pretty smoothly. Even so, I’m glad it’s over because the anticipation of the unknown was getting pretty heavy to carry. In hind site, I don’t think it was the best decision for me to join a Facebook Ocrevus group. There were some pretty extreme experiences shared and a fair amount of misinformation conveyed about both MS and Ocrevus. Each person’s body reacts differently to the ever growing range of MS Disease Modifying Therapies (DMTs), though. This was mine.

7:15 Checked in at Hospital Admissions
7:30 Rode up to the Infusion Center via the scenic route with a blue haired volunteer who got lost in the hospital 😂
7:50 All checked in and IV lead placed then taken to a chair. Waiting for pharmacy to bring my drugs up.
8:33 Drugs arrive. Benadryl, Solu-Medrol, and Saline into the IV first… I’m getting sleepy. Solumedrol is flowing, it feels a little cold as it hits the vein. They gave me a couple of Tylenol, too.
8:40 The nurse starts the Ocrevus Juice (O.J.😉) and says, “You’re off like a herd of turtles, Sister.”
8:51 I have a funky sweet metallic taste in my mouth😝.
9:50 They’ve now bumped up the infusion rate twice and all is well other than a mild headache.
10:15 The rate of infusion was bumped up again and all is well.
10:35 Well, I just had a mild reaction consisting of a worsening headache and dizziness. They are pausing the medicine for 30 minutes and then they are going to slow the rate of infusion down when they resume it. So… it’s going to take a bit more time than the originally planned 4.5 hours.
11:00 I feel better now that they’ve stopped the med and are just running saline.
11:24 Infusion resumed and I’m eating the lunch I packed for myself.
11:55 Bumped up the rate again and I still feel fine.
12:24 Last bump up to the same rate that gave me the headache and dizziness. Fingers crossed it’s okay now. There’s not much left in the bag.
12:40. I have the slightest of headaches but the bag is so close to empty that I’m going to ride it out.
12:52 Ocrevus half dose #1 is in the books! I have to stay for an hour to be monitored but then I’m free🕊️!!
1:50 The last drop of the saline has dripped, IV is out, and I’m heading out for a dear friend from church to drive me home
2:20ish I’m home, ready to shower, and put my jammies on. I have still have a headache so time for some Advil. The icky metallic/sweet taste won’t budge. The metallic part is the very familiar taste of the Solu-Medrol. I guess the sweet part is the Ocrevus because it started within seconds of it beginning.
3:40 I walked around the house for about 25 minutes doing little chores here and there before I felt the usual, sudden onset of fatigue settle in and bind me to the recliner. I’m going to be here a while, but I don’t think it’s related to the Ocrevus, just my typical MS. The headache remains entrenched, though, and it’s definitely from the infusion. I’m not sure which drug has caused it, Solu-Medrol or Ocrevus or even the two together. I do regularly get headaches from Solu-Medrol, but not typically until closer to the 24-hour mark and Advil or Tylenol shuts it down pretty quickly.
6:00 Ate dinner and resting. The headache is still slowly throbbing away. It’s not terrible, just there.
8:15 Added a couple of Tylenol to my handful of night meds and got ready for bed.
8:30 Tucked up in bed, getting ready to pray, and hoping the headache gets tired of hanging around and runs away with the dish and the spoon or hitches a ride with the cow jumping over the moon.

Friday, August 30th
7:20 The headache is gone!! I’m flushing red from the steroids and feeling tired but other than that I’m great😁.

I just have to survive the next couple of days while the steroids ooze out. I go for the second half dose two weeks from yesterday, September 12th. And then…I don’t have to go back for six months in order to get my first full dose!

Thanks for hanging around to read this and for the many who have reached out to me to let me know they’ve been praying for me. I know the prayers have made all the difference!

God be with you,

Amy