“You know what I say?! HUH? You wanna know?! Here’s what I say! I say, ‘FUCK MS!'”
This, reader, is how my first second-half-dose infusion began.
I walked into the hospital’s joint infusion room — calm and collected — bringing cookies and my Christian mother. There, a man (whom we will name Mike) sat waiting already. And this is how he essentially introduced himself.
“So what ‘cha havin’ done?” he asked me.
“I’m having the second half of my first dose of my Ocrevus infusion. I have multiple sclerosis.” Here people wear their disease and illness diagnosises like badges of honor — We have been through the horrific, we are here for a reason, and we are proud that we are fighting.
“I’m having Ocrevus too,” he said. I hadn’t asked. At least not yet. I was interested in Mike, though at this point I hadn’t even sat down.
“Oh so you have MS too?” Now he had my full attention. Of the several people in and out of the infusion room during my first visit, only one person had MS and his infusion was a different medication. Mike seemed to relish in his new-found audience as I watched him lean back in one of the puffy, brown leather recliners. He had nothing but time as he waited for his infusion to begin.
“Yep and I was on Tecfidera for YEARS before, and that shit had me hot then cold, hot then cold, hot then cold — and I’m talking SWEATING then FREEZING, SWEATIN’ then FREEZIN’!” He gave me a look — eyebrows high, eyes wide, mouth a straight line — that told me he was at the end of his patience and careful treading was necessary from here.
“Wow,” I said because there was nothing else to say. He was still paused in an expression that either showed he wanted to fight me . . . or he wanted me to understand that he was about to fight something.
“Well YEAH — Wow! And I told my doc, ‘Doc, I’m not stayin’ on that shit anymore’ so he switches me to this.” Mike throws up his IV hand and smacks the IV pole next to him. There is a clatter as three of the four wheels are lifted into the air then fell to the ground again.
“So how do you feel about Ocrevus so far?” I asked. I felt he needed to get his story out more than I needed to hear, but any person willing to tell me his/her tale — well, let’s just say I do have a fire-burning passion to question people and learn about them.
“HELL YEAH! I LOVE IT!” He yelled and I looked around to see if the nurse was concerned about his volume level; she remained working, which I equated to the fact that Mike must not be new. My mother was the opposite — She had frozen in a position that was partly standing, partly sitting and honest to God, her mouth was open as she gawked at Mike. I made a mental note to go to all infusions here on out alone.
“You know what I say?! HUH? You wanna know?! Here’s what I say! I say, ‘FUCK MS!'” and here, Mike threw up quite a forceful middle finger at me then — just as forcefully — at my mother. I think I realized then that I liked Mike — Not because he just flipped off my mother but I liked his blunt disposition and his level of energy. He was the type of person I would both be curious about and say aloud “Bless his heart.” I worried my mother disagreed though and I cut my eyes at her; I was raised in a home where ‘shut up’ was considered a bad word, after all.
Mike continued to talk though (as was the case through our joint six-hour infusion), and through my questions and his candid desire, I learned he was diagnosed years ago. Mike is convinced that multiple sclerosis is genetic — He said he has it, his brother, his aunt, and even grandparents. This was both highly interesting and startling. Before this, I had never met a person with MS who has another diagnosed in his/her family. “So how the hell you gonna tell me that it’s not genetic, huh? How in the hell ya gonna tell me that?!”
‘Me’ wasn’t really me but doctors, though Mike was quite taken with an energy, directing his anger at me.
“I — I don’t know.” I said. He seemed to need an answer, which he waved away with his other arm.
“Yea, I don’t know either. It is — at least for me it is.” Mike’s last thoughts on this topic began to turn to a whisper as the nurse went to start him on Ocrevus, then me.
Cutting to the chase, this infusion went so much better than my first. I told the different nurse about my Benadryl reaction as Jocelyn (my previous nurse) walked in. Just as Jocelyn, she was patient and caring and pushed the plunger on the Benadryl syringe down slowly. There was some dizziness but it was nowhere near what I experienced the first time, and we both attribute that to the fact that I ate a more substantial breakfast. Before I even realized it, my Ocrevus infusion was ready and the medication was slowly entering my body. I grabbed a blanket I had brought and cuddled up in it as people came in and out for different infusions.
All in all the infusion room was super busy, so much so that my mother had to give up her chair and return to the waiting room. Towards the last two hours though, there was an open seat and she slipped inside once more, taking this picture of me content and asleep.
We went out to eat at one of our favorite restaurants, continuing to think positively about this process and celebrating the hope that this medication will work.
After, I drove home and changed into my pajamas then relaxed, napping lightly until Andrew got home from work. All in all, it was a great day.
* * * * *
In other MS news . . .
I came across a multiple sclerosis site called The MS Mindshift. This site aims to inform everyone about “the critical matter the brain plays in the role of multiple sclerosis.” One article in particular I found fascinating: What Grey Matter and Lesions Mean When It Comes to MS. This tells how MS research analyzing brain matter is currently underway.
Some background: Everyone has the two types of brain matter — grey and white.
Grey shows the size/volume of the brain, and it is here that communication starts; white matter carries those messages. Originally — and currently — researchers/doctors/medical staff focus on white matter because this is where ninety-five percent of lesions happen. (Remember: Lesions are attacks — shown in orange in the site’s picture — which are the result of cells being destroyed). However, research now shows there is a decrease in grey matter due to lesions.
The article goes on to explain that when everyone ages, brain volume loss is normal, but for those with MS, this happens faster. “That’s because lesions in both grey and white matter can become scar tissue, which causes the volume of the brain to decrease.” In the end, the decrease of grey matter volume indicates long-term cognitive and physical disabilities.
Interesting and I’m eager to learn more as progress continues!
I also joined a social media Ocrevus group where those with multiple sclerosis who are either considering or on Ocrevus can ask questions and receive support. The group has almost 9,000 members from around the world, and here I’ve read so many different stories.
When people were diagnosed alone has been interesting. This happened to many as a young adult (like me), but others were diagnosed around the age of fourteen. This was the youngest age I’ve learned of until I read a few were diagnosed with MS at the age of seven.
I’ve also heard a plethora of side-effects supposedly from Ocrevus: One woman loss her voice entirely and is struggling to get it back. But the most discussed side-effect: About seventy-percent of the posts are on hair loss, and I’m not talking Aubagio-hair loss as I experienced before but hair loss to the point that women are balding and purchasing wigs. They essentially say they were deciding between wigs or wheelchairs, which is sad.
Another person wrote about her experience, which near-mirrored mine. She was diagnosed around the same time as me, started on Copaxone, switched to Aubagio, was on Aubagio for years, and a new MRI result showed lesions on her cervical spine. Here, she says, “My neurologist told me I’m lucky to be walking based on the location of the new lesions.” Let the weight of that sink in. Lesions can happen at any time in an MS person’s body. Based on where the attack occurs and what cells are killed, that affects body function. If speech is slurred, the lesions occurred a specific area; if an arm is numb, a different area; if a foot is frozen, still another; and paralysis, yet again — a different area.
I am always aware that lesions can happen at any time — so much so that I refer to MS as ‘a ticking time bomb.’ I’m aware that every person has a different experience and I’m aware that no two people are the same (bodies are different, lesion locations are different, more). However, I tend to forget what the word ‘progression’ means — I thought it meant going through less severe symptoms (tingling in a leg, an itch in my arm, coldness in a foot) until MS progresses toward worse (paralysis). That’s not the case though — Progressing means more lesions, more cells being killed; and the severity depends on the location. Just like that female who had one lesion, one day, and in one specific spot — she suddenly had paralysis. This is startling and terrifying, really, to be reminded that one lesion — at any time — can change my life for the absolute worst.
I think I need to recognize that. I’m living in a war zone and instead of placing myself in an area where I can live, where I am living my best life — I am still doing what society says. I am still working for a paycheck. I am still paying every bill. I am still waiting to achieve dreams.
That needs to stop.
And that is also where a different post will soon lead . . .
For more information on the disease-modifying treatments discussed, visit the companies’ websites:
For more information on other disease-modifying treatments, see the full list:
National Multiple Sclerosis Society.
Thank you for sharing this. Your posts are awesome. I’m a 40 year old guy that was just diagnosed with MS. Ran into it like a brick wall. Presently scared to death. I – and I’m sure many – appreciate you taking the time to put your story out there. Your posts have brightened my spirit today and will no doubt improve my experience when I walk in for my first Ocrevus treatment next month. Take care, stay strong and keep on posting!! No pressure, but we’re all counting on you. (Haha)
Hi, Dave! I’m not going to lie but your extremely sweet message made me both laugh and tear up!
First, I am sorry to hear about your multiple sclerosis diagnosis — What made the doctors realize it was MS? No doubt, it is terrifying when first diagnosed (I think back to my first posts and I was undoubtably scared) . . . BUT it does get easier. I remember when my doctor said to me MS is a disease that will require me to change how I currently live but I will no doubt learn to live with it. At the time, I thought those words were odd and heartbreaking; however, now that I look back and realize that doctor was right. I am moving forward a bit differently but I am no doubt moving forward and have learned to live so that (for the most part) I forget often I even have MS. I hope you will one day find this for yourself. If you ever feel alone, confused, worried though, we are all here and you are far from alone. Feel free to drop in any time and if you wanted to talk more, our email is email@example.com. For me, I found just knowing someone was there after my diagnosis helped a great deal.
I again cannot thank you enough for taking the time to read and write — It is now your comment that has brightened my day. I hoped someone with MS would find my posts and that it could help them in a positive way because when I was diagnosed, I could not find words similar. If you don’t mind me asking, how did you come across my posts? Oh, and there is a Facebook group called ‘Ocrevus for MS Support and Information’, though I will warn (as is with life) it is often the negative heard over the positive, which is why I try to remind people there “my” MS is not “your” MS because so many factors make everyone different. If you are a member, do not let them scare you. Everyone has different reactions to everything — the world, the environment, their MS, their medications — BUT some people are very positive and it is a great place to share any feelings.
All the best for you, Dave. Thank you again for stopping in and I wish you good health in your journey *forward*!
L (and Andy)
Hello and thanks for the response! And same here when I read your posts. Smiles, laughs and I’ll admit that something must have gotten in my eye during a few parts and caused a bit of a tear up.
But anyway, it is great to hear these things from someone who is going through it. I trust my doctors but I was scrubbing the internet to find real deal experiences. You go into much more detail than most which is what makes your posts great. They read like articles or stories. If you aren’t in a profession that requires writing / editing I will be shocked!
I originally went in to the doc with numbness and tingling primarily in left leg/foot. A little bit in both arms/hands. And pain in the back of my neck, left side of head and face. I also had a really weird electrical shock-like sensation from the left side of my head down to my left foot (happened once). That was the last straw and I called my doc the next morning. MRI of brain and c spine confirmed several lesions. Lumbar puncture confirmed the bands.
You’ll like this- I found your posts when I typed in “can you use the bathroom during ocrevus infusions” into Google.ha! Very specific.
I will definitely keep your email handy and if I’m brave enough to get a FB account I’ll check out that group for sure.
Did you have any issue with your insurance company not approving Ocrevus, and instead approving Rituximab? My understanding is that Rituximab is kind of the older version of Ocrevus. My doctor keeps saying that this is a likely scenario. I’ll know soon enough but just curious. My thought is to push hard for Ocrevus.
Thank you so much for the positive words and advice. I truly appreciate it.
All the best to you and Andy!
Hi, Dave! So good to hear from you — Thank you for the smile and laughs again!
I agree — I wanted real experiences from real people who lived through the real deal when I was diagnosed. I’m so happy that you found my writings and I do hope they continue to help. So far I only aspire (tremendously) to go into the writing field so hopefully that can happen one day!
I’m so sorry you had pain — primarily as your first symptom because, to me, that would mean a double attack (pain and fear upon diagnosis). I only had fear — I woke on a regular day and was blind in one eye then I got my diagnosis so fear twice. Is your pain gone now? I hope you can find comfort moving forward.
As far as insurance — I have not had any problems and each year I have a new insurance provider through work so I’ve tested quite a bit. There is an Ocrevus assistance program too (They should call you on their own, but if not DEFINITELY look into it) — I’m beyond grateful for them because they essentially cover the cost of my infusion. To provide an idea — My bill this year for one infusion (not even analyzing hospital and other costs — just the infusion) was $97,500.00. Between Ocrevus assistance and insurance, what I paid was this: $5.00. I’ll refrain from a too-long message about how corrupt medical costs are and say only I’m beyond grateful for this help. If you had questions though, I would reach out to your insurance AND contact Ocrevus assistance. It is my understanding that everyone (if not, mostly everyone) qualifies for it automatically.
I’m so glad you wrote about Rituximab — I had this mentioned to me briefly by a physician. I’ve been having joint pain and he was stumped because Rituximab he said Rituximab and Ocrevus act the same way and Rituximab is given to those with rheumatoid arthritis so I should not have joint problems if the cause is, in fact, arthritis. Very interesting.
HAHA That brought a great laugh out loud to hear how you found our site! That’s wonderful — I love that! The wonders of search engines, I guess, though I did definitely write about going to the bathroom after feeling a bit dizzy for my first infusion haha
Come back any time for positive words, new friend! I hope you are well — And the best to you too!
L (and Andy)
Oh girl, bless you. What an amazing soul you are. 💜💜
Hi! This means so much to get not only a message from you but such a sweet message. Thank you so much for stopping in — Your comment made me smile!