Get comfy, this is a long post.
It started with a bachelorette weekend (April 1-2, 2016). Drinking, dining, chasing a drunk bride-to-be down a Boston city street. You know, the usual. Oh, and a drag queen. Can’t forget the drag queen (she was awesome!).
Anyways, the party ended on Sunday, when I woke up in the hotel room I was sharing with my sister-in-law with a screaming headache. No big deal. I was a migraine sufferer who had just partied for an entire weekend. Except it felt infinitely worse than the worst migraine I’d ever had. I was also having difficulty seeing out of my left eye, which I attributed to auras. Not uncommon for me, but usually my auras were either yellow, red, or blue and only appeared in my peripheral vision. They never actually obstructed my vision. This aura (yes, one) was charcoal and somewhat blocked my ability to see.
Okay, so I had a bad migraine. I’ll take some meds, drink some water, go to sleep. I’ll be better in the morning.
Monday came and not only did my head still hurt like hell, but the “aura” was bigger. Just a bad migraine. I went to work.
At the time I was an event coordinator for a regional business newspaper. I spent a lot of time on the computer handling ticket sales, managing event websites, and constructing and sending weekly emails. Under fluorescent lights. I turned on my computer screen and immediately knew something wasn’t right. It was physically painful to even look at my computer screen, even with the brightness turned down and privacy screen over it. I thought I knew light sensitivity from past migraines. This was a whole new level of hell.
My manager told me to go home. I told her I could muscle through. I’d set up an umbrella (yes, an actual umbrella) over my work station, closed my left eye, and tried my very best. That didn’t work. About an hour later I told my manager I couldn’t do it, made an appointment with my GP and left.
The doctor told me it was a migraine. She prescribed me prednisone, which she had done for previous intractable migraines. I didn’t learn until much later that steroids are not generally the appropriate therapy for migraines. None the less, I took them. I also took the doctor’s note instructing me to have zero screen time for 24 hours.
A quick aside here: I was transitioning to a new job with a new company. I was supposed to start on April 18th. The Friday before the bachelorette I had given my two weeks notice. And we’re back in.
In the past, within 36 hours or so of taking the steroids I would feel the migraines abating. Not this time. These meds weren’t even touching the pain. Tuesday came, I had literally (and yes, I mean literally) no screen time: no phone, no computer, no television. I sat in a dimly lit room for much of the day. In the evening I tried to read, that didn’t work either.
By Wednesday the “aura” was really obstructing the vision in my left eye. I ended up going to emergency room because I simply couldn’t take the pain in my head anymore. An IV drip of reglan, torodol, and dilaudid handled the pain, but no the vision issue. When I told this to the doctor, his exact words to me were, “Well, we’re making progress. Come back if the pain returns.” Thanks.
And return it did. As soon as those meds wore off, the pain was back. Thursday rolled around and I had almost no vision in my left eye, and the periphery of my right eye field of vision had started to darken. Things were getting worse, not better.
Finally I called an eye doctor. I’d had an appointment scheduled with her in a few weeks, but I couldn’t wait that long. I had never seen this doctor before, but getting in wasn’t an issue. When she brought me to the exam room I said to her, rather bluntly, “I can’t see. My head hurts and my doctor and the ER think it’s a migraine but it’s only gotten worse over the last week. I’m not leaving here until we find out what’s wrong with me.” A bit in shock, I think, she simply looked at me and said, “Okay. We’re not going to worry about updating your prescription. Let’s find out what’s going on.”
She conducted every eye test imaginable. She did a basic peripheral vision test, where she moved her finger from outside of my field of vision to inside and asked where I could see it. On my left eye, the only place I could spot her finger was in the upper left quadrant of my vision.
She gave me a visual field test on the machine, where you look in and click the button every time you see the little dot of light. I knew things weren’t good when I was pressing the button for my right eye far more frequently than my left. This was bad.
The doctor came in with the printout that identifies blind spots. Keep in mind that everyone has blind spots in their vision, that’s totally normal. Usually your brain compensates for these. But this was no ordinary blind spot. The printout confirmed that I had approximately 80% vision loss in my left eye, and about 40% in my right eye. Losing that much vision over the course of a week was practically unheard of.
The doctor called her supervisor and a mentor. Three hours later she came back with her conclusion.
“There’s nothing wrong with your eyes, they’re perfectly healthy. But you clearly have vision loss, which means there’s something wrong in your head. My recommendation is that you go to an emergency room and have an MRI done. Like, now. Tell me where you want to go and I’ll call them and let them know you’re coming.”
When the eye doctor in a Walmart tells you you need to have an MRI done, it makes an impact.
Off to Yale New Haven Hospital Emergency Room I went, the eye doctor’s head’s up preceeding me. Once I was admitted, I told the ER doctor what was going on. I was immediately and repeatedly tested for stroke. The doctors were very worried because my pupils weren’t very responsive. It took much convincing to tell them that I’d come straight from the eye doctor, who had dilated my eyes.
They called in their ophthalmologist. Another eye exam, same results. When she held the book in front of me that contained the numbers in different colored bubbles (to test for color blindness) she said, “Can you read this?” My response,”I can’t even see it”.
She was continuing her exam when I finally asked her,”Have you ever seen anything like this?”
After a pause she said, “Well, once before. But I don’t want to say anything until we have some more answers.” My MRI had already been ordered.
“Please, doctor. No one will give me any sort of answer. What was it the last time you saw something like this?”
Taking pity on me, she said, “The last time I saw something like this the patient had MS.”
MS. MS? What the hell am I supposed to do with that?
I’d left my house that afternoon to go to the eye doctor. Here I was at midnight at the ER with a possible diagnosis that I couldn’t even fathom. I had heard the words multiple sclerosis but I had no idea what that meant. Or what it meant to have it. I couldn’t think about it.
Tim was with me this whole time. I’d called my sister on my way to the hospital to go walk Bee. That was 6 hours earlier. I told Tim to go home and let Bee out again, and asked if he’d bring me more comfortable clothes. A gurney in an emergency room isn’t exactly the most comfortable thing to lay on for 6+ hours, and I wanted some jammies.
Around 3 AM I was finally taken to radiology. I must give them credit, the technicians down there were amazing. We laughed and talked, then I was shoved into the tube for my very first MRI.
Sometime between 5 and 6 AM the neurologist came in to tell me the results of my scan. “We’re going to send you for another MRI, this time with contrast. There are two areas we want to take a better look at: your optic nerve and your left temporal lobe.”
“What the hell does that mean? What do spots mean?” Insert “oh, shit” moment here.
“Well, that’s why we’re sending you for another scan. We need to get a better look. In the mean time we’re going to admit you to the hospital.”
Stunned into silence, exhausted from no sleep, I think I just nodded. Normally, this is the part where I’d start thinking about all the horrible things that could be happening, how I would tell my family, and what it would take to get through it all. Instead I was numb. Thankful for that, and for the hospital bed I was not in, they brought me upstairs.
I had no idea when my next MRI would be. I told Tim to go home, make arrangements for Bee and Oscar, take a nap, and come back. I would probably be hours before I knew anything. Once I was in my room and settled Tim still remained.
“Aren’t you going to go home?”
“Yeah, I just want to ask the nurse why you’re here.”
“What you mean? I’m here because they need more scans but I’m not an emergency patient anymore.”
“No, no. I mean why you’re in this wing.”
“I’m in the neurology department because there’s something wrong in my brain.”
“You’re not in the neurology department. You’re in the transplant wing.”
This little detail is something I missed, seeing as I couldn’t see any of the signs as I was brought up. But it was simple: the neurology department, one floor up, was full. This is where the overflow went. After that was settled, Tim was off.
Not 10 minutes after he left someone came to get me for my next MRI. I was expecting to be stuck in the room all day, surely Tim would be back to come with me. Nope, hopped onto the gurney and away we went.
The staff in the radiology department had turned over and I was with a new group of techs. These guys were great too! After injecting me with the dye, in I went for another scan.
Surely the results wouldn’t come back before Tim returned, right? Nope.
About an hour after the scan the neurologist, and the entire neurology team, came in to talk to me. This can’t be good. In so many medical terms, the told me I had MS and they had found not 2, but 4 lesions in my brain. The lesion on my optic nerve was a condition called optic neuritis, a common symptom of MS. I’m a little blank on the conversation I had with the team. I’m sure I asked questions but none of the answers sank in. They provided me with resources to check out to learn more, not that I could read anything. They also said they were going to do a third MRI, on my neck and spine, to see if I had lesions there as well. They also ordered 5 days of IV steroids to get the swelling down on my optic nerve. That’s what was causing the blind spots. Then, they left.
Alone in my room with a mountain of information I was not prepared to climb, and totally unready to call Tim, I called my brother-in-law, an emergency medicine doctor in Boston. Though almost always busy, he picked up within two rings.
“J. They just told me I have MS. I don’t know what that means,” I said through sobs. The dam was bursting.
J spent the next 20 minutes explaining to me, in words that I could understand, what happens when you have MS. (To learn more, click here.) He also told me that MS is one of the most researched diseases of the last several decades, and that the prognosis for me was excellent considering my age, how quickly I was diagnosed, and my current symptoms (and lack of symptoms). “People with MS lead totally normal and ordinary lives.”
I can never thank J enough for his comforting words and patience.
I called my family, still not sure how I was going to tell Tim. By the time he got back to the hospital my sister, mother and father were all there. Obviously, he knew something was up.
The best way I could think to tell him was with the response my brother sent me when he found out. He sent me this clip from Family Guy (sorry for the potato quality, it’s not my video). Tim sat on the bed and watched it, then looked at me and said, “You have MS?”
“Yeah, that’s what they told me.”
He didn’t say much after that. He was exhausted and needed time to process. So did I.
Sunday came. In the late morning I was brought down again for my next MRI. The staff was changing over again, so I briefly saw the techs who were there the day before. We joked that I just wanted to see them, I said I just wanted to see anything.
Tim was there for the results of this one. No lesions on my neck or spine! Yay, for me! Now how do I keep it that way? That was up to the specialist they were scheduling me to see. For now they wanted to do a lumbar puncture to test some of my cerebral spinal fluid. They were looking for oligoclonal bands, a frequent indicator of MS.
Now, remember how I said I was about to start a new job? I was supposed to start on April 18th. The doctors told me I couldn’t work for 3 weeks. I wouldn’t be able to start until May 2nd now. And worse, I knew I was replacing someone they were about to let go.
On Monday, I called my contact and explained everything. I was a little disappointed that the best she had to offer me by way of comfort was, “Don’t worry until there’s something to worry about.” Okay, more than a little disappointed. But when she finally called me back she said everything was fine, that they hadn’t let the person go yet, and that my new start date was May 2nd. Phew!
Monday also saw my LP. Having only ever heard horror stories about so-called spinal taps, I was nervous. The doctor was wonderful, though. I told him I was nervous and he prescribed me some Ativan and a tiny bit of morphine. The morphine did wonders. The Ativan, not so much. I had an adverse and inverse reaction to it about 10 minutes after the procedure.
The LP itself was painless and unremarkable. The doctor frequently asked if I could feel anything. The best way I can describe it was that I was never in pain, it just felt like there was a wiggly worm in my spine. He had never heard that description before. They tested my CSF and, sure enough, those bands were there.
The steroids I’d been prescribed were finally starting to work. Over the next two days my vision came back to where it had been prior to this episode, the pain in my head was completely gone. The only thing that remains now is increased light sensitivity, which has waned over the last two years as well. On Wednesday I was finally released, with two final steroid doses left. I had one at an ambulatory infusion center, where I currently receive my treatments, and the last one I could do at home.
While at the infusion center there was another young woman who was receiving a treatment. We got to talking and she told me she had just started medication to treat MS. Wow, someone else who had the disease! We chatted for a while and I asked her how she came to the diagnosis, having recently learned that MS can be difficult to identify. She told me a story of painfully tingling legs, and a two year ordeal of diagnosis by elimination. I was floored, but apparently this is not uncommon.
She asked me about my experience, and I told her the story you’ve been reading. Then she asked me the question I didn’t want to answer.
“So how long did you have symptoms? How long did it take you to get diagnosed?”
I can certainly understand how someone who had been desperate for a diagnosis and proper treatment would be put off by sitting across from someone with the same diagnosis who had only dealt with it for one week. I felt terrible for her. But she was gracious and kind and we talked until her treatment was over. She wished me luck, and I did the same for her. I haven’t seen her again.
The final stage to all of this was the visit to the MS specialist that occurred two weeks later. After reviewing my hospital findings, my family history of autoimmune diseases, and the fact that I was square in the demographic for onset of symptoms (30 year old woman), we were together for only a few minutes before he said, “Yes, you definitely have MS.” He showed me my MRI and pointed out not 4, but 7 lesions on my brain. He said that exacerbations often occurred when 7 to 10 lesions form. Then he asked me a question.
“Are you tired?”
“Are you tired a lot?”
“I’m tired all the time. My regular doctor (whom I had been complaining about being tired to for 2 years) told me to eat better and lose weight.”
“That’s good advice for anyone, but you’re tired because you have MS.”
I sat in his office and cried. Now I had an answer to two things. Better yet, he recommended a treatment that not only has an amazing success rate for controlling the progression of relapsing-remitting MS (one of four types of MS – read about them here), but is also known to relieve the fatigue associated with MS: Tysabri. Since starting that (a story for another time), things have remained normal.
(Full disclosure and disclaimer: I am not getting paid to advertise any treatment for MS, any medical facility, or any doctor. Nor am I claiming any treatment is better than any other treatment. The diagnosis of MS and the decision on treatment is a very personal and private discussion between the patient and their doctor. I am neither a doctor nor an expert on MS. Nothing in this blog post should be construed as medical advice. Please seek the counsel of a doctor to discuss symptoms and treatment options.)
It’s now been two years since my diagnosis. I am totally fine, and my fatigue has dissipated, exactly as my doctor said it would. I’m healthy, active, and happy. Save for my monthly infusion, it’s rare that anything happens to remind me that I even have MS. I’m very lucky. Of all the scary things this could have been, this is the least scary.