Sometimes I forget I have multiple sclerosis . . .
This past weekend, for example, I got my hair cut by the same woman I have gone to for years now. We know a bit about each other — pets we have, holiday adventures, husband/fiancé facts, things we have gone through in the past — and it is because of this, I consider her a friend.
“How have you been . . . health-wise?” she asks while shampooing my hair. And it’s then I realize there’s a reason she is asking. There’s a reason because I have MS.
Over the past many months, I haven’t blogged about my MS. In fact, looking now, my last health post was January 30, 2018 — over a year ago. I sometimes question if I had any MS readers, and if you are out there — I apologize I’ve been distant. My goal was and always will be to be honest about what has happened in my life in the hopes that it will make those diagnosed (and loved ones of those diagnosed) more knowledgeable, less scared. And no one should be scared — ever. This is proven by the fact that I’ve essentially been okay while I haven’t been blogging. I’ve been living my dream of traveling, I’ve been trying to write a book, and I’ve been enjoying life with Andy and our pup and kitten. Life has been good to me so no matter what I say below, life is good to me.
What I wanted to start writing today though is something I started a few weeks ago. I had started to document symptoms…
First, I have had a continuing pain in my left arm. This started over two years ago when I slept on an air mattress so I figured it was just the repurcussions of that with off and on pain . . . but it never went away. Recently it became more troubling: The pain could go from feeling like a pinched nerve in my neck to (the more recent) an excruciating pain in my arm so much so that I couldn’t sleep, couldn’t hold anything. I remember lying in bed and crying, telling Andy it was as if the weight of gravity was so heavy that it was crushing my arm. Nothing could touch it, nothing could be propped under it, nothing could hold it. The pain could arrive suddenly too. One day I stretched — feeling fine at the start — only to realize the pain was back so severe that my arm was locked in mid-air. I saw a physical therapist and she was clueless as to what happened, which I don’t mean negatively because hell, I was clueless too — no injury had caused the pain, no situation had warranted it. My neurologist at first suggested Aleve but when that did not help, he suggested a steroid-pack due to my success with IV steroids to treat symptoms in the past. Therefore, over the course of six days, I took six pills the first day down to one the last, and for the most part the pain suddenly disappeared.
Then about a week later, the pain re-started with a different symptom: Half of my face felt numb. One day I went to itch my forehead and I couldn’t feel my fingers touching my skin. I itched harder and harder, not realizing, until my fingers hurt and it was then I became aware that I had lost feeling in the right side of my face. It wasn’t as if all feeling had disappeared though. Instead, it was as if clingfilm — layers and layers of clingfilm — was placed over that half of my face. I had the realization and feeling that I was touching my face but I could not fully feel it or feel relief from touching it. Once again, I called my neurologist and it was a second steroid pack, which — once again — helped.
Moving forward to another week, yet again a different symptom: My feet were in pain. This was the worst yet because there were a variety of issues. I remember sitting on the sofa with Andy and asking if I could bury my feet under him because they were so cold.
“Can you feel them?” I asked. “They are frozen.”
“No,” he told me. “L, your feet are warm.”
I didn’t believe him — there was no way that was possible — until I felt for myself and discovered two issues: One, I couldn’t feel my toes and two, my feet were warm to the touch but actually felt frozen. Over the course of the next week, the pain increased until I had trouble walking some days — Suddenly, a sharp pain would shoot through my left heel or left toe but always, always the cold remained. I tried to explain to him, my family, my doctor: “It is as if I have stepped into the most frozen water, like when I go hiking and have stepped into a stream or river. I honestly feel as if my feet have frostbite and my toes will snap off.” I was convinced everyone though I was exaggerating — It sounds too strange to believe but that is how it felt and the pain was too strong to tell myself otherwise, though I did try. The truth was I overcame my hatred of socks and started wearing my thickest pairs all day. A combination of that and wrapping my feet in a heating pad cranked on high was how I waited for relief . . . without any. Not only this but the pain in my arm had come back and my face still didn’t have all of its feeling. I called my neurologist again, begging for help but he said my symptoms weren’t severe enough for IV steroids, which were reserved for more critical cases (such as if I couldn’t walk at all). Along with this, I unfortunately couldn’t take another steroid pack due to the fact that I had too many too recently so his advice was Aleve, but mostly I had to wait. Let me say here, I like my doctor and I do trust him so I did what I needed to do: I kept going and promised to call back with an update in a few days, as he requested.
When I called back, the pain was worse still but my doctor was not in the office due to making hospital rounds. Then we kept missing one another’s call and soon another neurologist finally phoned me back: He prescribed Gabapentin, a medication that would help elevate pain but, he warned, would not treat my symptoms. More importantly, he recommended getting an MRI.
“Your last MRI was done in August 2018,” he told me. “It was a brain MRI. Have you ever had a spinal MRI?”
I didn’t know it was possible, though I soon learned lesions can occur in the brain and spine. For the spine, MRIs detail the two, what I will call, ‘segments’: The thoracic and cervical spine. The thoracic is the longest spinal region and the only spinal region attached to the rib cage. Running from the abdomen up, it connects to the neck — or the cervical spine. The cervical spine has seven vertebrae, or a vertebral column. MRI-speaking, if there were any lesions, this imaging technique would find them.
“I think it is wise to do all in an MRI to ensure the medication is working,” the new neurologist told me, “but keep in mind — Your symptoms may or may not be MS-related.”
I agreed, of course I agreed, though I had an unnerving feeling my symptoms were MS-related, which made me anxious that my MS medication was no longer working.
“Right. I will send through the MRI order for your brain and your thoracic and cervical spine,” the new doctor said. “And you can start by taking two Gabapentina day — but if the pain persists, take three.”
Turns out, the medicine helped some but not enough to make me want to take another pill; and before the MRI secretary called to schedule my MRI, my symptoms were gone — the pain was gone in my arm, the numbness gone in my face, and the pain was gone in my feet. I was and am essentially fine . . . until the results of my MRI, which just came in and are the reason for me writing now . . .
I had my MRIs — which, with the brain and thoracic and cervical spine, radiologists suggest dividing the two because it is a three-hour process so (combined with my claustrophobia) that would be hell on earth. My MRIs were — we will say — eventful as I later learned when Andy played a secret recording of me drugged on my claustrophobia meds. In this recording, which lasted over thirty minutes (from the time we got into the car to leave the hospital to the time we arrived back home), let’s just say I got to hear first-hand how fiery I am when I’m angry because mercy sakes, I was royally ticked. This was proven from the fact that I cussed, oh, 59 times and said — I quote — “I just wanted to set the story straight before things were embellished by certain people and lies were told by certain people.” It was during this time I told Andrew of how I was convinced the radiologist was trying to kill me, how the radiologist accused me of doing “voo doo shit” and therefore being Hudoki (meaning Houdini), and how to breathe by taking two gasps — and only two gasps — of air.
Laughter is the best medicine so that’s why I included this bit of information before getting into the less funny part: the MRI results.
First, in comparison to my last MRI in August 2018, I do have new lesions — or damage, or scarring, to my nervous system due to multiple sclerosis. In fact, I have eight new lesions, which my neurologist said was — quote — “what I don’t like to see.” He went on to say that of those eight, several are enhanced — meaning the lesions are new or growing larger, which shows they are more recent. “Not necessarily within the past week or two,” he said. “It could be ‘recent’ as in the past two or three months.” He went on to say I did have spinal cord lesions too, though none were enhanced, but it was hard to determine if they were new as he could not compare them to past spinal MRIs since this was my first.
All of this news lead him to saying what I suspected and feared: My multiple sclerosis is progressing.
And that means I have to find a different medication because while I’ve been tolerating Aubagio well (I’ve been on it since October 2017), it essentially isn’t helping me.
After hearing this news, my neurologist and I talked at length about different disease-modifying treatments (or more simply put, medications) on the market right now. It is here I am going to highlight what he told me and what I have read on the drug companies’ websites and other online articles, if anything to help myself remember.
- Ocrevus (pronounced oak-re-vus)
This is the treatment my neurologist suggests due to it being a more potent MS medication. This medication targets white blood cells that contribute to nerve damage in MS.
In trials, this is proven to be a strong medication and is the best when looking at data from MRIs — It decreases the number of lesions, decreases relapses, and decreases disability. The unsettling news though: It has been on the market for only two years. When I asked him if he was alarmed at that short timespan, he said no because it has been in clinical trials for three to four years before so it has actually been used for six to seven years earlier. Also, he added, this medication is similar to rheumatoid-arthritis meds that have been on the market for twenty to twenty-five years, which made me feel better.
This is a twice-a-year infusion, which means it is done every six months for several hours. To detail further, this medication calls for going the hospital’s lab and having an IV put in for four to five hours. The first “dose” is split so I would get half the dose the first time and then go back two weeks later for the rest. After, I would be on a six month-cycle. If I decide to go on this, I need to have routine lab testing, such as for Hepatitis B (which apparently can affect the medicine).
- SIDE-EFFECTS (most note-worthy)
In the two years on the market, my neurologist said it has had “no new surprises in terms of its safety profile,” which includes zero cases of Progressive Multifocal Leukoencephalopathy — or a much-appreciated shortening of PML (a brain infection that I will detail more about soon).
- The main side-effect though is due to reactions to the infusion, which would be similar to an allergy, and include the following: hives, itching, rashes, swelling, fever, nausea, headaches, etc. This is nothing major, he assured me, as it can be solved with Benadryl and/or steroids.
- Other side-effects are Hepatitis B reactions but this is only if you already have Hep. B.
- Weakened immune system
- Risk of cancers
This keeps the white blood cells from entering the brain and spinal areas, which is where the MS lesions occur. My neurologist was not for this medication but wanted to tell me about it so that I could make an informed decision and research further.
This has been on the market for fourteen years but was pulled for a year when several people died. It was then reinstated with more stringent monitoring. However, people have still died on it since that time.
This is also an infusion at a hospital, though it is monthly here.
- SIDE-EFFECTS (most note-worthy)
- The most concerning: PML. PML is a rare infection of the brain caused by a virus (the JC virus, which is living in half of us already. This virus is fatal in fifty-percent of cases). I also recorded earlier in my Keeping You Posted writings, the scary part is that you can test negative for the JC virus and actually be positive, and you can suddenly change from positive to negative. My doctor said hundreds of people have gotten PML on this med so we would have to have me checked for the JC virus first (but again, tests can show inaccurate results and/or results could change). Overall though, 1,500 people over last few years have gotten this brain virus while being on the medication.
- Herpes infection of the brain and spinal cord are other side-effects, which can cause blindness, meningitis, and — among other listings — death
- Weakened immune system
- Various infections
- Liver damage
- Pain in arms, legs, and joints
It reportedly targets the cells that cause relapsing MS. This medication is made by the same company as the Aubagio meds I currently take.
(In truth, due to length side-effects, I skimmed Thisbe information, though it on the company’s website.)
This is also an infusion, but it is given in eight doses over two years. In year one, there are five consecutive doses. The next year, there are three consecutive days. I’m unsure what happens past that . . .
- SIDE-EFFECTS (most note-worthy)
- My doctor reported one-third of people getting thyroid disorder, which is curable with medications
- Serious auto-immune problems where blood cells attack organs, which can cause death
- Upper respiratory, viral, fungal, sinus, and urinary tract infections
- Pain in joints, backs, arms, legs, mouth, and stomach
- Stroke and tearing of arteries
- I was curious about other medications that I had ruled out in the past, such as the ones below, but he said they should not be an option because infusions are stronger than both oral pills and injections, and infusions have better safety precautions.
So that’s where I’m at . . . which also means the end of my post . . .
From here, more research is planned and once a decision is made, we have to ensure insurance will cover the infusions. “We have a strong case,” my neurologist told me and I now understand what is hidden behind his doctor-lingo: Essentially we have tangible proof in my MRIs that show my MS is progressing at a pace faster than what we thought . . . or hoped, if ‘hope’ is a word to use.
It is strange. All day my mind has been preoccupied: What am I doing? I keep asking myself. Why am I here, meaning a location — here as in this point in my life. And I don’t have an answer . . .
No one can predict what multiple sclerosis will do . . . and there is no treatment. Am I living the best life I can right now? I asked myself today. Am I living the life I want to live? If a serious attack happened today, tomorrow, next year, in ten years — Could I look at my life and feel fulfilled? It was then I realized the answer is no. It is not that I am unhappy in my life — I’m not — but I have dreams that I want to no longer be dreams. I have goals: Goals of hiking the Appalachian Trail in six months, goals of living in another country, goals of teaching English as a second language, goals of experiencing different cultures, goals of writing a book. And while I am content, I have settled.
I realized today I have waiting for life to happen to me: Waiting to see what happens with my MS, waiting to determine if my MS medication is working, waiting to get test results, waiting to determine if new MS meds are needed. Waiting, waiting — and the cycle will not stop. I don’t want to wait anymore. Quite frankly, I don’t know what time holds and I don’t want to risk dreams for waiting so I guess I’ll end this post being hopeful: Maybe this is the news I needed to shake me out of my own safety net. Maybe I needed to hear this to stop holding myself back. Maybe — in some warped way — MS will free me.