Moving Forward

Andy and I were hiking the Appalachian Trail when the reality of what may come set in and because of that I broke down in tears — in the middle of the path, in the middle of the forest, at the start of our hike.

“I don’t know what I’ll do,” I told him and I had more to say but the words didn’t seem to form. I wanted him to know the weight of multiple sclerosis was one I most often think I can carry, but the weight of a second disease — honestly and simply put, I don’t think I’m strong enough.

For you to understand though, I need to go back to March. During that time, I had extreme pain in my joints — primarily my elbows and knees. What was strange though was there was not only joint pain but such severe stiffness that moving those joints was problematic. For instance, if I was sitting cross-legged or sleeping with my knees close to my body — My legs would seem cemented in place and it was extraordinarily painful to lengthen them. It wasn’t just maintaining that position for several hours that made the movement hard either — If I squatted and attempted to rise immediately, I would need help rising. If I walked, particularly up or down stairs, the pain was strong.

Even more odd, at the time I had that joint paint, two fingers on my right hand (pointer and pinkie) swelled so much that they looked like plump sausages. More alarming, this went on all day for weeks.

Multiple sclerosis can cause a range of problems. To make understanding the disease simple: Nerves provide a path for the brain to relay electrical impulses to the body. If this path is compromised, the relaying of that information is also compromised so if the information is to talk, speech may be slurred; if the message is to walk, tripping or paralysis may happen instead. I say this because the body is filled with nerves so if I have a sudden weird symptom, I assume some nerve somewhere was damaged and that explains the result. With this rationale, I contacted my neurologist.

It was here I learned joint problems and swelling are not associated with MS so they are very unlikely to be MS-related. My doctor also noted that in readings on Ocrevus (the disease-modifying treatment I am on) and in reports with his other patients on Ocrevus, the symptoms are also not common with the drug. Saying that though, he stressed it could still be possible but that probability was slim. What he wondered though was if these symptoms came from rheumatoid arthritis, which is an autoimmune disorder. He then reminded me (as others have) that a second diagnosis (such as this) may happen because autoimmune diseases (such as MS) have “a propensity for other immune disorders.” In fact, the unfortunate saying is “auto-immune diseases like to come in pairs.”

By this time it was May and despite the swelling in my fingers going mostly gone down and the pain in my joints being not as severe, I still made an appointment to see a rheumatologist . . .

Starting with my fingers, this doctor wondered if I had dactylitis, which is so eloquently known as “sausage fingers” and judging by the nickname, it was pretty accurate. Dactylitis though is a skin condition that causes painful swelling in the fingers and toes and is brought on by a skin infection. Now I did not fit the bill.

As far as my joint problem, the rheumatologist wondered if it was arthralgia, which is inflammation in joints that creates stiffness and pain. The causes for that though also did not match — For instance, one cause can be due to injury, which I did not experience. He then pondered if I had osteoporosis, a bone disease that happens when your body makes or replaces too little bone. I must have made a surprised expression because he said he understood people commonly associate osteoporosis with elderly people; however, it develops in one’s thirties. Interesting. Still, he was not fully convinced so he began to delve into my MS and Ocrevus treatment: Ocrevus, he told me, is similar to the arthritis medication Rituximab because both binds onto B cells and kill them. This means — theoretically — I should experience no arthritis flare-ups due to Ocrevus being in my body. Further, he ruled out arthritis because the symptoms can come and go within a day, whereas mine was consistent for weeks.

This lead the doctor to order X-rays of my knees and hands, along with bloodwork. Long story short: I would later learn all of these came back relatively normal.

Now the kicker: The rheumatologist said my symptoms could be coming from a second disease — such as Lupus — and without conclusive lab results to indicate what “it” is, we have to wait until “it” shows “itself” again . . .

This brings me back to the Appalachian Trail. Between the symptoms and doctor visits and tests — the thought of being diagnosed with a second disease was shattering.

“I don’t think I’m strong enough,” I told Andy between tears.

“Of course you are,” he said without hesitation, and so (after some time) we gradually continued to walk again . . .

and this moment is what I have chosen to focus on — not the possible second diagnosis but that Andy believes I am strong enough to carry colliding diseases . . . but how?

I suppose in a sense, no matter what happens — to me, to you, to anyone — we all have to continue to strive. It doesn’t matter if we want to and it doesn’t matter if life is fair towards us — We must continue to move forward. Possibly this is why he thinks I am strong enough — because I would have no choice.

When I was first diagnosed with multiple sclerosis nine years ago, I remember how those words felt as if they were a death sentence . . . and yet here I am — striving and most days, thriving.

Currently, I’ve been on Ocrevus for two years. I know I have written before about symptoms I have experienced taking this drug, but I want to hit on this again because I have two updates: First, while my hair was previously super brittle, breaking, and falling out (primarily at my hairline), it has returned to feeling like hair — smoother and stronger. Not only this but hair is ever so slightly growing back. Here are pictures earlier in my treatment journey (left) to now (right). You can see thin little hairs wisps of hair from my temples. I am hopeful that more hair will grow too as I’ve experienced hair loss and then growth with other MS treatments, but I say all of this with the hopes that someone — who is concerned about hairless due to Ocrevus — knows the hair can and may grow back.

With the good though, the bad often follows so what I have noticed after two years on Ocrevus is that I am struggling when it comes to my skin. I break out often and in multiple places. I confess my skin was very clear and smooth so it is a bit frustrating to feel a teenager with significant acne problems. At the end of the day though, bad skin is a small price to pay for the benefits Ocrevus gives me and so this is why I choose to stick with it.

As far as sticking with it, I went in for another infusion at the end of June. For many people, such as me, our Ocrevus infusions have turned into “rapid infusions.” This means if problems did not occur during or after the infusion before then the infusion process now can be sped up. For instance, instead of six or more hours, my hospital-infusion-trip totalled about four. The modern wonders of medicine, right?

I want to pause here to say an overwhelming thank you to Ocrevus’s support program (Ocrevus Access Solutions) — Among much of what they do, they provide assistance for this drug. To give an idea: Before insurance, this one June infusion should have cost me $97,500 (yep, you read that right). This isn’t just me either. Others in an Ocrevus support group I’m a part of report the same: One person shared his/her infusion cost $156,000 and another person, half of his/her one infusion cost $100,652 — all before insurance. Keep in mind also Ocrevus is a treatment that is administered twice a year so in these cases, ignoring hospital fees and doctor fees (in the thousands) but solely looking at the drug itself — my yearly bill would have been $195,000; the other Ocrevus patient I mentioned, $312,000; and the last patient, $402,608 — It all honestly seems too nonsensical to believe.

Now let’s talk about the insurance I pay to have: My insurance only paid $3,875.95 of my June infusion bill, leaving me with the outstanding amount of $9,3624.05. Now get this: The amount I actually paid for that infusion? $10.00 and that is solely and completely due to Ocrevus Access Solutions. I hope the company finds this post one day because the amount of ‘thank you’s I (and others) have cannot be formed as completely and loudly as they should be. Simply put, MS patients on Ocrevus would not be able to afford this treatment and the company is the reason we can so thank you — a million times over.

Overall, I am exceptionally privileged to get his drug, which allows me to be as healthy as possible, and I try to remember this. Because of that, I like to celebrate my infusions. Therefore, keeping true to my first infusion — I still take the day to celebrate after receiving it. This time I met my mother for a yummy Greek lunch outside and then we got ice cream.

And yes, despite the over 90-degree temperatures, I did order an ice cream cone with rainbow sprinkles. I wanted the bliss of innocence so dear reader, here is my best advice: If you are going through a healthy journey too, pause to celebrate where you started and where you’ve come — and do that with a rainbow-sprinkled ice cream cone. Leave me a message too because I’d love to share in your happiness.

Still on the topic of Ocrevus and celebrating — prepare yourself — because this news is grand: After my June infusion, I had another MRI of my head and spine. MRIs are important to get at least annually because they can show whether treatments are working. My neurologist and I were super interested in this MRI because previously, about one year ago my MRI showed one new brain lesion from the MRI prior (I believe that was in December). My doctor suspected that lesion occurred before my full switch to Ocrevus but to be sure, we compared MRI results and this June’s scan showed I have no or active new lesions! This means my health is unchanged, which means my health is stable! Keep in mind, Ocrevus (and any treatment for MS) cannot cure the disease (there is no cure) — These treatments, however, do slow to progression of the disease so, in short, Ocrevus is working for me as best as it can! Great news.

With that concern turned to assurance, my neurologist next focused on the global pandemic we have all come to know — the coronavirus. Many MS disease-modifying treatments prevent the immune system from responding to vaccines. (In Ocrevus’s case, for example, the drug kills B cells, which are essential in the COVID vaccine.) Further, if vaccine response — such as ones for COVID — are compromised, they may not be effective. This is why in an attempt to maximum vaccine effectiveness, Ocrevus patients are recommended to get the COVID vaccine before — and as close to — next infusions due to Ocrevus lacking strength at that time. Because of my weakened immune system due to MS and because there was a chance the COVID vaccine could protect my health, Andy and I chose to get full vaccinations.

Now the question was did Ocrevus allow the vaccine to do its job? Recently, my neurologist wanted me to get an antibody test to see “my level of robustness in response to the COVID vaccine.” If I did not have a response, he warned I may need to be more cautious (such as wearing a mask more, regardless of lifted mandates). In the end, the result of my bloodwork came back and I do have COVID antibodies. It is important to note though that antibody tests do not show a degree of antibodies — instead, they simply say “yes, there are antibodies” or “no, there are not.” This means as far as how effective the COVID vaccine is in my system, we will never know (and this is why some advise to still wear a mask indoors or in crowded spaces) — We only know the vaccine’s fighters are floating around in my body.

Still, moving forward I feel calm. When the coronavirus first spread and until I got my antibody test, I was so focused on other people — Why they were not getting a vaccine, why they were directly contributing to the spread of the virus, why they were choosing to allow the virus to mutate, why they purposely choosing to continue mandates, lockdowns, and more. Why? I couldn’t understand it . . . and now I realize I don’t need to understand it. I need to do what I feel will protect me and benefit my health because the reality is I can only control myself; and in the end, remembering that one thought was liberating. It is what I choose to hold onto . . .

PS — To you, my readers, the ones battling personal own health journeys or the ones close to someone who is: I want to talk to you directly. First, you are doing it. You are kicking ass and moving forward. Celebrate that because it is worth celebrating. Second, for those that have reached out and contacted me, your stories and thoughts have humbled me and also strengthened me. You are not alone, my friends. Keep moving forward.

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