My MS and Social Consequences

Everyone’s MS shows up differently. For me, either my brain is working ok or my body is working ok but they don’t typically both work at the same time.

Yesterday I had physical therapy but I knew I was going to a co-worker’s going away party last night. I planned for it, did my PT and had about 6 hours to rest before going to this social event.

What I failed to remember was that I’ve been out on disability for nearly 6 months. With the exception to 2 short visits to the office since March I haven’t been around. People noticed, people had questions and wanted to catch up. It was great, thoughtful and made me feel a tad bit better because I just assume no one actually gives a shit if I’m there or not.

I had one drink to take the edge off the pain so I could have a conversation. I had many conversations though, and using my brain to follow so many conversations has a price to pay the next day.

While the night of catching up lasted less than 2 hours I woke up barely able to move. Muscle and joint pain ripped through my body as I tried to put on a bra and top, numbness in the whole of my legs made putting my jeans on a touch harder than just the typical balance issues.

Today, I will pay for all those conversations. Today, I will rest most of the day before my youngest son’s eye appointment. Hopefully tomorrow I’ll be back to my standard baseline or I will rest more.

Therapeutic Yoga – what’s this now?

As I prepare my next post, which will cover Complex PTSD, I read about therapeutic Yoga.

At first glance I was expecting just yoga, so I assumed ok that’s great, everyone should stretch, blah blah blah.

Therapeutic Yoga however is about mindfulness and not focused on poses or rather, the strictness that is “the proper pose”. Intrigued, I read more.

Using this form of yoga can help with all kinds of PTSD and mindfulness in general. Not focusing on form, it helps those who tend to be more critical of themselves, and with no mirrors it sets the environment to be gentle and nonjudgemental.

There is research on how this form of yoga, in addition to working with a therapist can greatly benefit those who suffer from PTSD.

While there are places you can find to do therapeutic Yoga, I’m personally considering doing this as part of my daily routine. As a female who grew up in a time of Barbies, super thin models and Baywatch I have often struggled with self-esteem and loving my body for what it can do, only seeing where it fails.

What do you do for mindfulness? Is there something you love and helps you? I’d love to hear it!

My Experience with Ocrevus – first 2 weeks

My first infusion of 300 mg was on August 8th. I had been told the only difference between Ocrevus and Rituxan was human antibodies versus mouse antibodies. My body had absolutely no side effects with Rituxan so I wasn’t prepared for the things that followed that infusion day.

The process after checking in at the infusion center was a standard protocol at this facility for Ocrevus. A nurse came and got me and I picked the chair I wanted to sit for the next 4-6 hours. We confirmed who I was and took my vitals. The nurse swiftly disappeared to order my first 300 mg of the medication that’s hopefully going to keep my MS at Bay a bit longer.

When she returned a needle was placed in the vein in an arm of my choice. Saline was pushed, I was given 650 mg of Tylenol to swallow, 50 mg of Benadryl was pushed into the vein followed by 125 mg of steroids. Then I’m left, warm blanket, water to wait for the bag of medicine. About 30 minutes within my arrival the Ocrevus was attached.

About an hour into the infusion I started getting itchy. It didn’t occur to me that anything was wrong at that point. The itchiness spread to my entire body and more intense. I notified the nurse and the medication was paused. This is how my allergic reaction started. I was given options, first was pushing 25 Mg more of Benadryl, I was able to get additional 25 on top of that, pepcid and steroids if needed. I decided to take the additional Benadryl and push through the rest of the infusion.

Every 60 minutes my vitals were checked, monitoring blood pressure and temperature. The Benadryl was making me sleepy, which never happens with the pills. Dozing in and out while reading a book. The machine beeps at times intervals, alerting the nurse they can increase the dosage per hour flowing into my vein.

On the way home I got very nauseated, by the time I got home I had a fever and headache. I checked the site for the manufacturer, these things were normal and should only last 24 hours. Ok, I thought I can do this. I even went to my second graders event to meet his new teacher and drop off supplies. I’m sure I looked contagious with my cold sweat inducing fever, body aches and queezy stomach.

The body aches lasted days, not hours. The fever lasted a week, not hours and the headache lasted two days, not hours.

The whole time I felt terrible I could only hope these things would pass prior to my next infusion. Hold on to hope this medication would stop my MS.

August 22nd (today) was my second infusion. I told my nurse that the fever lasted a week. Apparently this happens, though not to everyone she has had a couple of patients that have a fever for a week. She also noted that the steroids made my face red, though faster than any of her previous patients.

Per the drug website, most people who have a reaction with the first should have less or no reactions from future infusions.

An hour into my second infusion I once again began to feel itchiness. This time I spoke up right away and I was given pepcid.

When the infusion part was done and I was in my “watch period ” is when I broke out into a cold sweat and headache. So far, the symptoms are the same as last time. I have a friend who tells me the third infusion in 6 months should be better (fingers crossed)

Below are a list of “reactions” listed by the drug company. I decided to post my experience because I couldn’t find anyone that had my reactions after my first infusion. It’s frustrating to be a person who gets the “not common” reactions to medications, but I can’t be the only one. Hopefully this post will help someone like me.

  • itchy skin
  • rash
  • hives
  • tiredness
  • coughing or wheezing
  • trouble breathing
  • throat irritation or pain
  • feeling faint
  • fever
  • redness on your face (flushing)
  • nausea
  • headache
  • swelling of the throat
  • dizziness
  • shortness of breath
  • fatigue
  • fast heart beat