Chapter 1; My Diagnosis
In August of 2010, just after I had turned 20 years old, I was in a hotel in Anaheim, California with my “at the time girlfriend” getting ready to spend the next day at Disneyland. This was supposed to be a stress-free weekend getaway; time for relaxation. I woke up first, somewhat early and decided to take a warm shower before we had to get ready to leave for Disneyland. I sat down in the tub hunched over letting the hot water hit my shoulders as I relaxed in a “half awake, half asleep” state of mind. This was a great start to a great weekend! This is where it all started. While sitting there relaxing my right foot slipped under the faucet which like many showers was drizzling a bit of water despite being in “shower mode”. It felt like… “liquid electricity”. That is the best way I can describe it. At the time I was a bit confused; was I slipping into sleep? Well, it definitely peaked my interest but still I thought it was probably nothing, just all in my head. Then while readjusting myself my left foot slid under the faucet; HOT!
“What the hell?”
Now I was awake! So I started my “investigation”. I slid my right foot back under and there it was again; liquid electricity. Left foot; scolding hot. Had my foot fallen asleep? No, no pins and needles, this wasn’t right… So I shut the shower off, grabbed a towel and made my way into the room towards the small couch we had. I grabbed a plastic knife from the provided eating utensils by the coffee maker and sat down. My girlfriend was awake now so I told her what had happened in the shower as I took the plastic knife out of the plastic package. I first used it to poke my right foot (the one that felt funny) and I could feel it but it didn’t feel pointy, it felt blunt as if I had a blanket over my foot and I was trying to poke it through the blanket. Then I poked my left foot to compare; it felt sharp like a pointed object should feel…
“What… the… hell…”
It had to have fallen asleep, maybe just more than I have ever experienced, right? As I waited for the blood to return to my foot my thoughts wandered to the previous week where I had woken up at 2:00 am with an excruciating pain in my right leg. I ended up going to the emergency room where I left with a sciatica diagnosis and a bottle of Norco (pain killers). That subsided pretty quickly so I thought nothing of it though I occasionally experienced a warm sensation on that leg as though sunlight was peaking through the blinds and hitting my leg. I assumed it was just a residual effect of the sciatica thing, I didn’t know, I had absolutely no medical knowledge. Well, anyways, back to the hotel room; it had been a while and still no change in my foot so I decided to call the Kaiser nurse hotline where I was told I should come to Urgent care immediately just to be safe. So just like that our weekend getaway was canceled, we had season passes to Disneyland so we would just come back another time.
This is where my many trips to the Riverside Urgent Care started as the numbness in my foot slowly began to rise up my leg and the many doctors I saw scrambled for a better diagnosis than whatever the previous doctor gave me. The numbness quickly moved up my shin, my thigh, my stomach and all the way up to my shoulder blade (all on the right side of my body). Pretty much every doctor was certain it was a pinched nerve in my neck. Again, I had zero medical knowledge but I remember thinking that if I had a pinched nerve in my neck wouldn’t the numbness have started there and worked it’s way down? I likened it to a strand of old Christmas tree lights; when you take a bulb out all the bulbs from that socket down go out, it does not work its way up. But I didn’t know how the body worked, maybe electricity functioned differently when it came to nerves? All I knew is that I wanted it to stop so they prescribed me Prednisone (an oral steroid used to reduce inflammation) and they assured me this would take care of everything in no time.
But over the next couple weeks I only moved further away from “normal”, I began to rapidly decline. Now the left side of my body was growing weak and limp; walking was becoming more and more difficult as my foot began to drag across the floor. I could not lift my toes! I lost my sense of taste and my vision was starting to blur!
“What is happening to me? Am I dying or something?”
Finally, an Urgent Care doctor decided that I should see a neurologist; I got in quick and right away she ordered an
MRI to get a closer look at what may be going on. Soon after that she called me back in to go over the findings. She was looking at her computer and without even looking up at me, the 20-year-old kid sitting awkwardly in the corner of the room, she said, “I’m thinking MS”. There was a short moment of silence as I thought to myself “MS? What is MS?” The only time I had ever heard the term “MS” was on the TV show “House M.D.” and anything that makes it onto House is never any good. I didn’t want to admit that I didn’t know what MS was because I didn’t want to let my concern be seen. “I’m 20 years old, nothing worries me” right? Well, that is the mentality of a 20-year-old… She told me she was ordering a spinal tap to confirm and once again I was off despite not really knowing what any of this really meant.
Well though I would have never admitted it at the time, I was kind of “concerned”. So, as soon as I got home I jumped on Google to look into “MS”. MS; Multiple Sclerosis. Of everything I read, nothing really stuck with me except one word; Chronic.
By now I was in a wheelchair because walking had become too difficult. I remember struggling to walk from the parking lot to the hospital entrance and having to stop halfway there because it was just too difficult. My Mom grabbed a wheelchair and I reluctantly took a seat. One spinal tap later I was officially diagnosed with Relapsing Remitting Multiple Sclerosis. I remember being handed a bunch of literature on different injectable (there were no oral medications yet) medications; I had to start one and it was up to me to decide which one. I felt overwhelmed; this was all so new and there was so much information to try to take in. Disease modifying medications, avoiding heat, avoiding stress, steroid infusions; I had been plopped into a world that I knew nothing about.
Of all the medications I had to choose from I went with Copaxone; I think the needle size was the determining factor for me. I soon started an IV steroid called Solu-Medrol (Methylprednisolone), which was a liquid form of Prednisone at a much higher dose. I did this for 5 days and finished with a Prednisone taper. This cleared up my symptoms pretty quickly so despite some new daily routines I felt relatively “normal” again. I remember thinking I had a relapsing/remitting disease, so obviously so long as I could make it to “remission” I was in the clear! I obviously had a poor understanding of the disease and what relapsing/remitting actually meant.
For the next year and a half or so, I experienced many different symptoms which all felt so strange to me. At the time it was rather scary, it was all such a big deal to me, but in retrospect I had it pretty easy. I watched a bunch of videos on YouTube of other people living with Multiple Sclerosis, which motivated me to both own the disease and control the disease. I didn’t want the disease to own me. I started blogging because I wanted help other people not to feel so hopeless; I wanted to talk about my experience and connect with other people who had MS. I also felt that if I didn’t put my story out there for people than I was basically suffering for nothing and that was not going to happen; I wanted something good to come out of it. I also became more active (physically) than I was before as I didn’t want to waste my life away and let MS beat me. “I may have MS but MS does not have me” as I always heard. I went on hikes, little trips, picked up photography, did a little school here and there, balanced a new social life, worked as a photojournalist for a local online newspaper, and even road motorcycles still! Life was looking pretty OK.
Chapter 2; It Just Got Real
In February of 2012 I experienced the most severe relapse I had ever had; my MS had attacked my spinal cord landing me in a physical rehabilitation hospital (Loma Linda University) for 6 weeks. This period of my life is kind of fuzzy; this is when my memory problems really started. Here I quickly developed major spasticity in my legs, neuropathic pain, all my limbs grew limp to the point that I was bedridden, I had problems with speech, I couldn’t swallow for a while, I developed really bad clonus, and the list goes on and on. It all happened so fast! Here in the hospital I realized that I had faced my own mortality; I now understood how fragile the human body was, how fragile life was. That really stood out to me; I had fallen out of bed, I nearly drowned in my own vomit because I could not turn over in bed, I even developed a pulmonary infection and I could not breathe very well causing me to require oxygen tubes for a while! Fragile.
After much, much, work with physical therapists, occupational therapists, and speech therapists I could finally dress myself, brush my teeth, get around in a wheelchair on my own, transfer myself from my wheelchair to my bed, eat on my own, almost use a computer typing with 1 finger on one hand, and was learning to walk short distances with a walker and someone at my side holding my hip. They wanted to keep me there roughly another month, but I could not handle that place anymore. The sounds, the bed, the medical smells, the hospital food, I just wanted to go home! So after some consideration they finally discharged me because I felt that I could take what I had learned there home and continue my exercises on my own.
Leaving the hospital to be back in my own home felt great but it was not long before MS tried to take control again. About every month and a half I would have a “flare up” of symptoms and have to go back to the hospital for an infusion of Solu-Medrol (usually 3-5 days at a time). Steroids usually leave you feeling “wired” for a while, sometimes resulting in a night of insomnia, but because I was on so much so often I built a tolerance and no longer responded to them. I remember even going to sleep while I was being infused, something I would have never guessed I could do in the past because of how steroids had previously affected me.
In between those many hospital visits I started seeing yet another new neurologist (I had seen just about every neurologist with Kaiser in the Inland Empire area), one who claimed to be an MS specialist. Right away I asked her what the next thing I needed to do to get out of the wheelchair was. She simply told me “however you are in 6 months is the best you will ever be so you should get used to the wheelchair because this is the course of the disease”. She actually said that. I am 21 years old and you’re telling me that I probably won’t be walking much ever again? “What about Tysabri?” I asked, “I think it’s time to try the heavy duty stuff since Copaxone and Rebif obviously have not been working”. “Well, I don’t really like to follow the literature on that…” Oh really? Because I don’t really like being stuck in this wheelchair! I will never forget that visit. It was time to see a new doctor. An MS specialist who actually knows a thing or two about treating MS.
While I searched for a new doctor who wasn’t an idiot, desperation began to take over. I started looking into alternative therapies and though I was not ready to let bees sting me every day just yet (seriously, look it up), I was ready to start experimenting with things like diet, acupuncture, LDN (Low Dose Naltrexone) and I did a lot of research on stem cell therapy which seemed pretty promising. I met with someone who had had the procedure done in Panama and I was in contact with a few others on Facebook who had done stem cell therapy as well. I felt ready to give it a go so I started raising money online to have the procedure done abroad since it was not being done in the states just yet.
A little into my fundraising my Dad found a doctor nearby who specialized in MS and who we had heard good things about. After looking around on the net and Facebook, it looked like he was well known in the MS community and no one had anything but good things to say about him. My Dad told the nurse about my story and they were able to get me in extra quick. Right off the bat he agreed I was a great candidate for Tysabri. After a spinal tap, I tested negative for the JC virus (reducing my chances of developing a rare brain infection known as PML) and so I had the green light for treatment. I also started Acthar injections, which were an alternative to steroids for people who can’t tolerate them or no longer respond to them. My new neurologist used Acthar for the treatment of MS relapses in Tysabri patients because there is a lower risk of infection mitigating the chances of developing PML.
Just a few months into my new treatment and I was walking around the house (with a cane) and I felt great! To think that if I had stayed with that other doctor I would still be in a wheelchair living a completely different life on a completely different path! Who knows how many lives she stole from patients because she “didn’t like to follow the literature” or in other words, she didn’t like to do her job. Also, I no longer had to go to the hospital every month and a half, I was more or less, “stable”. Now I could focus on rebuilding myself without a relapse coming around and undoing all my hard work forcing me to start all over every month and a half. I could finally focus on “swimming” instead of “not drowning”. My neurologist continued to emphasize that the Tysabri had not even really kicked in yet which meant I was responding very well to the treatment!
Over the next few months, I continued to improve. I worked hard at home and physical therapy to really get back up on my feet. Soon I no longer even needed a cane to walk! I had however developed a sort of “permanent” spasticity and balance deficit so I could not run but before I knew it I was traveling around the states and Europe doing about 5 miles of walking a day while I was out there! I could not care less that I could no longer run or do things like ride motorcycles because I was seeing so much of the world, things that most people will never see in their life! Life was looking brighter and brighter!
Chapter 3; The Course of the Disease
In 2014, I felt I was ready to move on to the next level in my life. A new chapter. I was stable and independent again. I had grown to hate Southern California as it was just too hot! There are two seasons; Summer and “winter” (for about a month). So I decided to move to Colorado where I had some family and an old friend. The weather was great! I felt so good in the cold! I had an apartment and every morning I could sit on the porch in jeans and a T-shirt drinking my coffee just enjoying the 30-degree (0 Celsius) weather. I had a job, an awesome truck and I was building a new social life; I loved it there! Everything was great! Until a little less than a year later when I started noticing some new symptoms that made me think (at the time) I was showing early signs of PML.
I brought this up to my neurologist out there who did not want to test me for PML. She was always worried about the cost of a medication/procedure to my insurance company… So wait, this is what I need and my insurance has never given me any problems in the past but you are worried about spending their money? It’s my insurance! I pay for it, not you! I could not get her to budge so I started contacting my old neurologist about it all. I decided to stop Tysabri till I could confirm whether or not this was a PML thing. At first I was just going to fly back to California to run some tests but the way it ended up working out, I moved back home with my parents in December 2014. I needed a proactive neurologist, not one who was somehow in the pocket of insurance companies. I also needed a support system because I realized that if I relapsed I had no one to help me get through it. That made me feel unbelievably alone.
It took me a while to get back into the system with my neurologist out here (in California) but it was nice to feel like I was once again in good hands. I was negative for PML and eventually started Tysabri back up, but my health was really starting to decline. Tysabri seemed to have stopped working so now it was time to look into the next thing. It took me a very long time, but I was eventually approved for a relatively new medication called Lemtrada, which was originally used (in much higher doses) to treat certain types of Leukemia. It’s a type of chemotherapy that specifically attacks T and B cells (which are what is believed to attack the Myelin Sheath in MS) instead of everything like traditional chemotherapies for cancer do. I could not wait to start this medication as my vision and balance were really taking a dump. It almost presented like vertigo; I felt so dizzy and that caused me severe nausea. Nothing was helping relieve all this and I was slowly able to do less and less so I was just counting down the days to my Lemtrada infusion.
That brings us to the present; on September 25, 2015, I finished my first round of Lemtrada (given 5 days in a row the first year and then 3 days in a row the following year) but even after several rounds of steroids and Lemtrada my vision is still getting worse, even several months later. I am not sure if this means that I just am not responding well to this treatment or if these symptoms have become “permanent” like my spasticity, I have no idea. What is next? There are no “stronger” treatments as of now. All I know is I can’t live like this! I don’t want to! So once again I am looking into some alternative treatments to get me functioning again. I had to stop driving in February 2015 because my vision is just too unsteady; when I move my head everything blurs and if I try to look at something even 15 feet (5 meters) away everything looks like it is moving left and right really fast. Not great for safely driving. Certain head positions trigger this as well, causing nystagmus (rapid eye movement). Not easy to function like this… So I can only hope we find a solution to this “puzzle” because I am desperate to get my independence and my life back.