Multiple Sclerosis - My Diagnosis

I him and haw over what to blog about all the time. There are always thoughts running through my head. I usually try to write about something that has happened to me to make me a better person, or make me realize my mistakes, etc. Then I listened to an episode of This American Life entitled “Our Friend David”. It was in memoriam of David Rakof, a brilliant writer who recently passed away from cancer. One of the most poignant stories in the series was the one highlighting his cancer diagnosis and then his inevitable death. He spoke about it with such grace that I didn’t feel like I was hearing of a stranger’s story, but a story of someone I loved. I reflected on how difficult it must be to write about something so tragic, to write about something that will change your life forever, to write about death, it’s intimate. 

I have a problem being vulnerable. I don’t believe in actuality that anyone really likes to be vulnerable, but in my case I tend to cover up so much of what I actually go through, simply because the thought of people feeling sorry for me makes me sick. I don’t want people to look at me with pity. I would rather be looked at with awe. And so I decided to let me guard down (probably temporarily) and write about the day(s) that changed my life. Grab a beverage; this might be a long one…

I have this weird habit of rubbing my eyes super hard after I wash my face. You know when you rub your eyes so hard that when you open them, it’s a bit blurry? That’s what I did. When I opened them, they were a bit blurry, but I paid no mind. I went about my normal day, but soon started to realize that the blurriness was not leaving my left eye. It wasn’t disturbing at first, just a little annoying, but one night as I sat down at my computer to write, I noticed that I couldn’t see the bottom half of the page I was looking at. It was as if someone had drawn a line with sharpie marker horizontally across my eyeball, then blackened in the bottom part. It was time to go to the doctor. 

Local urgent care told me they thought there was a piece of something behind my eye. I figured with all the rubbing I had done from the towel, I probably scratched something or rubbed something right in. I was referred to an optometrist. I was waiting for results after several crazy tests. I sat in the lobby, I remember this sweet old woman who was sitting next to me asked, “are you ok, dear?” I replied “oh yeah, I’m just waiting for results, the doctors think I have something in my eye.” She smiled at me, seriously one of the warmest smiles I’ve ever seen and said “I’m sure things will be just fine dear.” I thought it was an odd response to something that I was feeling was no big deal. The doc returned and told me that I was definitely experiencing vision loss in that eye from what they believed was something called Optic Neuritis. It was briefly explained that this was an inflammation of the nerve behind my eye and I would be referred to a neuro-opthamologistat. “Well that makes sense.” I thought. I probably rubbed my eye so hard that I caused my nerves to become really irritated. I called my mom, I have been to a million doctor appointments in my life (that’s not an exaggeration) and I know when I want my mom there and I know when I don’t. I didn’t feel like this was a big deal, but she insisted saying “I know, but I just think I should come.”

An example of what some patients with Optic Neuritis see.

The next morning I waited in a cold gray room for my neuro-opthamologist. I remember now thinking how dank that room seemed, like nothing good ever happened there. The lights were too low and there were too many unfamiliar objects around. My mom and I joked as we always do when waiting for a doctor. We caught up on family news and then my mom mentioned a friend of hers, Tom*. Tom had been suffering from Multiple Sclerosis for quite some time, and my mom would always ask about his progress when she saw him. She told me how she had recently ran into him and how well he was doing and commented on some new meds he was taking. We both talked about how nice he was and how upbeat he was even with a debilitating disease. 

Neuro-opthamologist walked in. He sat down on his cold metal stool and looked at me. “Well, you do have optic neuritis.” He continued, “And I’m sure you know from googling it that it is the first sign of Multiple Sclerosis.” I’m not going to lie; I cannot remember one single word he said after that. I became cold instantly. I looked at my mom and I could feel the tears coming into my eyes. I started to cry. My mom took my hand it was cool to the touch and made me feel like a little girl. She spoke to the doctor; again I had no idea what they exchanged. I knew nothing about Multiple Sclerosis, besides what I had been told about Tom. I knew it caused people to use wheelchairs and expensive drugs, but aside from that, I knew nothing. I felt like I had been slapped in the face. I couldn’t stop my tears. The doctor left us with a referral to a neurologist and steroid treatments. 

I remember getting in my mom’s car. I remember her calling my stepdad and crying. I remember calling my then-husband and telling him. I don’t remember the ride home. Looking back now, it seems like I cried for days. I remember at one point putting my head in my mom’s lap, still not knowing anything about this disease and saying “I don’t want to die.” She hugged me close and through her own tears said “oh honey, you are not going to die.” 

The days after that ran together. I went in for the steroid treatments. Steroids are not new to me. I have taken them since I was a kid for my asthma. They are both a nightmare and a wonder drug. A “normal” dose when treating an asthma attack is somewhere between 100 – 150mg tapered off over time. Unfortunately for me, I’ve been on steroids so much, that I experience horrible side effects including disabling joint pain, terrible mood swings, extreme hunger and weight gain as well as hair loss.  I’m usually able to convince my doctors to give me a 50mg dose and taper from there. However, the recommended dose of steroids for someone having a multiple sclerosis “attack” or “relapse” as they are sometimes called, is 1000mg via IV for 3 days. I cried again. 

Now I sat in an old patient hospital room. The beds had been moved and replaced with fake leather type arm chairs. Sort of like the chair you sit in at the dentist. It was explained that a nurse would insert an IV and they would administer the steroids over the course of an hour. The first thing I freaked out about was the IV. I have had terrible experiences with IVs in my life. Because of my asthma and I suppose some genetics, I have small, flat veins. I’m terribly hard to start an IV on and it usually takes more than once to get a good stick. The second part of this ordeal that terrified me was the thought of having an IV port in my arm for 3 days. Since I would be having this treatment 3 days in succession, the nurse thought it best to leave my IV in so they didn’t have to restart one each day. I felt lower than low. Might as well wear a sign that says “I HAVE A DIESEASE”. 

 At this point my mom had gone home. I cannot remember how many days exactly were between the days I was diagnosed with optic neuritis to the day I started treatment, but I know it was quick. I was scared and alone. My then husband was at work and wouldn’t/couldn’t take the time off to go with me to my treatment. I remember sitting in that off white dentist type chair sucking on a piece of candy. Because of the rapidity at which they were administering the drug, I would acquire an awful taste in my mouth. I started up at the tv that was turned on for me and for the first time since this happened thought “why me”?

I’ve had my fair share of medical issues in my life. I spent a great deal of my childhood in the hospital or at home sick. I was even homeschooled for a brief period of time when I was too ill to go to school. I had terrible asthma, disgusting eczema and a plethora of allergies and now I was looking at the possibility of Multiple Sclerosis. I still kept a faint light of hope in the back of my mind, that maybe…just maybe, I would see the neurologist and he would tell me this was just a fluke incident. I held on to my eye rubbing theory, even though in my heart I knew it wasn’t true. 

For anyone who hasn’t had an MRI let me tell you, it’s an experience in itself. I lay on table maybe three feet wide. My hands are placed on my stomach. I had a brain/spine MRI, so I had my head locked in place by something I can only compare to a vice grip. It’s tightened around both sides of my head. Not to the point of pain, but it’s definitely uncomfortable. Then they placed a sort of mask over my face. It reminded me of a hockey goalie’s mask. You could see out of it, but it was close to my skin. Then I was rolled backwards into a metal tube. I got to wear headphones and listen to “music of my choice”. Really? You’re sticking me in an open ended coffin and you want to know if I want to listen to Lite Rock or Bach? I was in for an hour. I was rolled out briefly so a tech could administer a dye into my body. The dye would highlight any lesions on my brain that were “active”.  That hour may have been the longest of my life. There isn’t much to do when you’re stuck in a tube, but think and think and think. 

The green highlighted areas show "active" lesions in an MS patient.

I met Dr. Garreth Parry the second week in December 2006. To this day I think of him as one of the kindest persons I have ever met. He saw me right after my MRI. I remember how kind his eyes were. When he spoke to me I felt a sense of calm. He sat down and explained to my mom and me what he had seen on my MRI. I had an “active” lesion which was what was causing my optic problem. There were also several other inactive lesions. They are sort of like little scars left on your brain after an MS relapse. Because of the number of lesions, active and inactive, that were spotted I was diagnosed with Relapsing Remitting Multiple Sclerosis. Dr. Parry explained that this was not a death sentence and that many people with MS lead very active normal lives. He explained that I didn’t have to start any medication right away but the option was there if something happened again. 

I left his office feeling both anxious and relieved. I was relieved that I would regain my sight, I was relieved that I was not going to die, I was relieved that my MRI wasn’t worse than it was, but I was anxious, now I entered into a waiting game. 

The ironic part of this story and my diagnosis (and why I often believe this was bestowed upon me) is the fact that Multiple Sclerosis is unpredictable. I could at any time, even as I sit here typing this, lose feeling in my feet, feel tingling in my hands, experience painful muscle spasms. There are no warning signs; there is nothing to prevent another attack. It’s a waiting game. Anyone who knows me well enough knows I am a self-proclaimed and medically diagnosed control freak. I like things done my way, in my time, under my circumstances. With this disease, I can’t do that and it was initially driving me crazy! I had more anxiety about what could happen than I did about what actually happened. It took a very long time to come to terms with the fact that just because this is my body and just because I am bossy, does not mean I have any control as to what goes on inside. Sure, I can do some preventative measures. I can keep out of the heat and eat healthy. I can exercise to keep my muscles in shape, but I can’t stop another attack from happening. 

It is five years later now, almost 6 actually, and aside from a few strange feelings I’ve had in my limbs, I have not had another diagnosed relapse. My MRIs continue to go unchanged and there are some days when I don’t even think about having MS. Most days I do think though. Sometimes I have pity parties. I am terrified to imagine what my life might be when I get older. Will I be able to handle having children? Will I ever be in a wheelchair? But more frequently I think of how lucky I am. I have been dealt a shit hand but I feel like I’ve managed to play my cards right. My mom constantly reminds me of the good things in life. My friends and family have been 110% supportive, offering up any and everything I could possibly need, and my sweet boyfriend looks at me with eyes that hint that he doesn’t see a single thing wrong with me. And last but not least I have Luxie Lou. My lou dog. I can’t help but smile while I type this. She has been with me every single day since this happened. No matter how sad or pissed off I’ve been because of this, she always greets me with her wiggly butt and happy tail. I’ve found it’s those simple things like that, that keep me going every day. 

How can you not love that smile!

I didn’t write this so people would pity me, I wrote it to prove to myself that I shouldn’t be ashamed of the person I am and have become. I wrote it so other could understand why I’m sometimes a crank. I wrote it because I’ve never told some of those details to anyone. I don’t have a cute quippy ending for this post, quite simply because this disease changes me every day. It changes the way I look at my life and the lives of others and because of that, I don’t think I can end this with a ‘lesson learned’ sort of paragraph. So I shall end with this: “The lotus is the most beautiful flower, whose petals open one by one. But it will only grow in the mud. In order to grow and gain wisdom, first you must have the mud --- the obstacles of life and its suffering. ... The mud speaks of the common ground that humans share, no matter what our stations in life. ... Whether we have it all or we have nothing, we are all faced with the same obstacles: sadness, loss, illness, dying and death. If we are to strive as human beings to gain more wisdom, more kindness and more compassion, we must have the intention to grow as a lotus and open each petal one by one. ” – Goldie Hawn