Vol. 19 Issue 19
One PT tells her own story of living with multiple sclerosis
It was December 20, 1994 and I was 16 years old. I suffered a career-ending back injury in the middle of a basketball game. The next morning I woke up with my legs burning in pain, and I was numb from the waist down. I had surgery the following June for a ruptured disc. I like to think that even though that was the end of my athletic career, it led me to choose a profession in physical therapy.
In college, I had an episode of foot drop that was persistent for a few weeks. I went to the neurologist scared that something was occurring in my spine. The MRI was fine, only showing my old surgery.
Later in graduate school, I experienced a horrific pain in my legs and my waist, numbness and pins-and-needles in my legs, and spasms so bad that I could hardly walk. I finally went to the ER, and they assumed it was another disc. I had no x-rays and no MRI, but was given medication for the pain and spasms. I also began having severe headaches, trouble with my vision and trouble concentrating.
When I started having new symptoms, my back injury was the diagnostic focus for several years. My first MS symptoms were confusing.
In the summer of 2004, I was having numbness and pins-and-needles in my right leg, and my foot and ankle were weak. There was one day in particular when I was sure my symptoms meant that something was going on in my nervous system. I was in the shower shaving my legs, and I put my foot up on the edge of the tub. My foot wouldn't stop bouncing. I pulled my foot down and then put it back up, and again, it bounced. I thought, that's not normal.
Adding Up the Symptoms
After I got out of the shower I sat down and started thinking. I thought back to high school when I ruptured a disc. I made a list of events from 1994 to 2004. My list included things like numbness, pins-and-needles, foot drop, impaired balance, heat intolerance, a shock-like sensation when I flexed my neck, and a fatigue that I had never before experienced.
I had experienced fatigue from sports, from nights out partying in college and from pulling all-nighters studying in graduate school, but this fatigue was different. It seemed that no matter how much I rested, I was still tired. And now on this list I could include clonus. I had one of my good PT friends do manual muscle testing, reflex testing, and test me for both babinski and clonus.
I was bewildered because I had endured no injury at work, not even the slightest strain. The numbness and pins-and-needles persisted, and I was tripping over my foot. I made an appointment with my primary care physician and relayed my symptoms to him. He immediately related it to my spine, despite my argument against it.
I kept telling him, "I don't think this is my back. This feels very different." I felt like I already knew what it was, but I was afraid if I said "Doc, I think I have MS," he would think I was nuts.
I had a grandmother with MS, and I had already been looking back through my textbooks and researching online. Each time I opened up the books, I hoped to find something different. All of my symptoms, however, were pointing toward MS. I just wanted the symptoms to go away.
Despite my discord, my primary care physician ordered an MRI of my lumbar spine. I thought, I'll have the MRI, it will be fine, and then maybe he'll listen. I also asked him for a referral to a neurosurgeon whom I knew from work who had an impeccable reputation and wonderful bedside manner.
I went to see the neurosurgeon and he went over my films with me. He told me, "It's not your back." "Well, what is it then?" I asked. "Well," he said as he shifted in his chair, "you have to consider other conditions." "Like what?" I asked again. "You have to consider some sort of tumor or MS." Hmmm, well when put that way, I think I'll take the MS. "What would you do if I were your daughter?" I asked him. And that's when he advised me on what tests to have.
I submitted to a battery of EMG and nerve conduction velocity tests. I also had a brace made for my right leg, because of the continued clonus. I can only imagine what my patients thought as I tripped into their rooms, unsteady, and proclaimed "Hi, I'm your PT." A couple of them said, "You look like you need PT yourself."
No Diagnosis Yet
The tests were all normal and did not indicate MS. I went back to my doctor, and he changed his diagnosis from bulging disc to peripheral neuropathy, then to polyneuropathy. I got into several arguments with him that I augmented with professional literature. I also contended that if it was early on in the disease process, the tests may not confirm MS. Not to mention the fact that I was having symptoms that I needed to know how to manage.
Shortly thereafter, I began fielding dreaded phrases such as, you're young, you're healthy, there's nothing wrong, it's all in your head, you're stressed and depressed. My frustration escalated, and my quest to prove what I believed was going on in my body strengthened.
Finally, in October, my physician gave me a referral to see a neurologist in Boston. The first doctor I saw gave me the diagnosis of sacral nerve root adhesions due to a lumbar laminectomy. "I had surgery in my lumbar spine, and you think this is coming from the peripheral nerves in my sacral spine?" I asked him. "That doesn't even make anatomical sense since my sacral spine is much lower than where the level of my surgery was," I said.
That appointment did not end well, as he left the room abruptly appearing frustrated. He ultimately ordered visual and somatosensory evoked potentials, which were also normal.
Shortly thereafter, I saw another neurologist for a second opinion. I honestly felt like things just weren't adding up. I felt that something was hiding in my body causing these symptoms that were quite uncomfortable and annoying. He told me that I had adult onset cerebral palsy. Now that one made absolutely no sense.
Writing It All Down
I started keeping a symptom journal in January 2005. In February I saw Dr. Dawson in Boston. He literally laughed out loud at all the previous diagnoses and said, "I think you probably have MS." It was then that I felt very conflicted with feelings of both relief and trepidation.
I could hear the battle in my head. One voice was screaming, "Well, no kidding it's MS!" and the other voice was asking, "Well, now what?" At that visit, Dr. Dawson recommended a spinal tap to objectively confirm MS. During the month I waited for my appointment, I kept going back and forth about whether or not to even have it. I kept playing the "what if" game. What if it confirms MS? What if it's normal like all the other tests?
At the time I thought, 'I can handle this. It can't be much different then the steroid injections I had in my spine after my surgery.' The tap itself was rather abominable, but is there really an enjoyable spinal tap? Guess what the results were? Yes, they were normal.
I think my family was in their own state of denial about the "possible MS" and hoping and praying that I was fine. I'm sure no parents want to hear that their child has a progressive neurological disease whose course cannot be predicted. My parents knew about all the tests and attended many appointments with me. I didn't always tell them how I was really feeling physically because I did not want them to worry. I did share with them when things were more severe, and when I needed help.
I saw my physician again in May because the left side of my face, my left arm and my left leg were numb and felt like pins-and-needles. He ordered an MRI of my brain and spine. Of course, the MRIs didn't show any MS. So he told me he didn't think it was MS and maybe I should exercise.
I was fed up with not being heard. I felt in limbo; here I had these symptoms that were making me feel physically and mentally awful, and yet none of the tests were confirming MS.
In July, at the recommendation of Dr. Dawson, I began pulsed steroids in an attempt to manage my symptoms. For six months, I went in at 7 a.m. to get a bag full of IV Solumedrol. I received three days worth each month, and then went to work. I completed my work day as best I could, often with a green hue to my face and nausea. I went home and dealt with the anxiety and insomnia that were side effects of the steroids, often functioning on very little sleep. There were times when I was so nauseous, dizzy and sweating from the steroids that I thought I was going to either throw up or pass out.
I exhausted myself trying to hide how I was really feeling both physically and emotionally from my colleagues and patients. At the time I was, ironically, working in a rehabilitation hospital, on the neurological floor.
Coping With Work
I found it very difficult to be a patient and take care of patients at the same time. I found it challenging to provide good care when I was so tired, or when my legs were hurting so badly I felt they were going to crumble beneath me.
I would be working with a patient who would say, "I'm too tired for PT. You're young and healthy, you don't understand," and I would snap back, "I'm tired too, and we all have our own issues." I was frustrated, and I even questioned if I really had MS or not.
My education and training taught me to seek out evidence, and technically there was no evidence in my tests and my MRIs that I actually had MS. However, there was my family history, my physical exam and my clinical history. With each passing month of steroids, my veins blowing, the bruises, the mood swings, the nausea and the steroid hangover, I really began to wonder if it was really worth it.
I slowly told my close friends and my closer colleagues what was going on. I still feared repercussions from my manager and employer because of my job description as a PT and the demands of rehab. I had several patients with MS. Most of the time I just felt closer to them in a sense, because some of my symptoms were those that they experienced as well.
One of my colleagues suggested going to an MS support group. I pictured a bunch of people in wheelchairs who would stare at me while I walked in the door. I think it's tough for my friends to totally understand my MS. I envied them at times, because they were getting married, having children and traveling.
I was dealing with severe fatigue, side effects, doing injections, seeing doctors and paying co-pays for MS medications. There were times when I was really sad because they couldn't join me for the 3-day 50-mile MS Challenge Walk in Cape Cod. They definitely supported my fundraising, and supported me with phone calls, emails and cards, and I know they were with me in spirit.
Finally, a Diagnosis
On May 10, 2006, I was finally diagnosed with MS, just two days after my 28th birthday. Dr. Dawson diagnosed me. Later in November, I started using Rebif.
My entire family has been very supportive. My parents go to the walks with me and cheer me on. My mom goes to lectures with me, and both my parents help me when I am going through an exacerbation. My aunt Patty walks with me on the 50-mile walk. I have found ways to involve my whole family in my fundraising efforts. This year will be my fifth year walking 50 miles. The Challenge Walk is my way of celebrating what I am able to do, and my way of helping patients with MS of the future.
I moved back home to New Hampshire and bought a one-level condo with an elevator. Now 30 members of my family, including my parents, are within two miles of me. I switched jobs as well. I now work in outpatient pediatrics and have been there since October 2007.
I also have a new neurologist (Dr. Dawson retired), Dr. Ann Cabot. She is extremely intelligent, down-to-earth, has a sense of humor and is very compassionate. She ordered all tests again because it had been four years. Ironically, the spinal tap and evoked potentials were normal. She ran blood work, again to rule out anything else, and it all came back normal.
I happened to go into a flare in March and upon calling Dr. Cabot's office, she wanted to see me that day. She is the only neurologist who has seen how bad I get in a flare. I had to literally have my mom's help to walk. I was so full of spasms and numbness and weakness that I could barely move. I had a lot of pain as well.
At that visit, she went over my new brain MRI. There was a lesion in my corpus callosum. I had overwhelming feelings at that visit. This was my most severe flare, and it really scared me. I cried as Dr. Cabot talked and validated all that I had been going through. I really did have MS. That was the first time it really sunk in; not as a physical therapist but as a patient. I finally felt like I could relax, and let Dr. Cabot and guide me in managing my MS.
The thing that has changed the most for me since my symptoms began is that I have to plan more. I have to plan time with family and friends and plan time for rest. It can be irritating at times having to plan so much, but it's what I have to do so that my body does not overreact. I allow myself downtime, and allow myself to do things to conserve my energy, like sitting down for meal preparation, taking the elevator and sitting when I can while I'm treating at work.
I do get frustrated when my legs hurt, when I feel tired and when my injections feel like battery acid going into my body. I believe that the fatigue and the pain I experience are the most troubling symptoms and the most difficult to manage. They are the symptoms that take the biggest toll physically, mentally and emotionally. I also believe that these symptoms have made me a better physical therapist and have enabled me to connect with patients more effectively. I can relate to what they are going through.
On the Job
All of my colleagues at my new job know about my MS. My symptoms have become more obvious, including my fatigue. Occasionally, especially when I'm very tired, I may lose my train of thought, have word finding difficulty or be forgetful. My colleagues, manager and our director have been extremely supportive through all of my tests and flares. They've helped me come up with strategies to manage my symptoms.
I work with kids ranging from 18 months to 19 years old with a multitude of diseases, conditions, abilities and disabilities. The thing I love about pediatrics is that the kids just want to be kids. They want to play. They want to be as normal as possible.
Sometimes, a patient and I might both be having a bad or tired day. We talk about it and I think it helps them to be able to talk about how they are feeling. I then give them the control that day to decide what we are going to do for their session. I think it also helps that they know on some level that I do understand. Not all of my patients or their parents know, it depends on if and when it's appropriate to share. The kids have taught me mental and emotional strength, perseverance and hope, and that it's OK to rest and take time to play.
I think that because I get to "play" more, jumping, walking on the balance beam and swimming, I am improving my flexibility, strength and balance. We have a Nintendo Wii at work, and I bought myself one for my 30th birthday to do my own "Wii-Hab" at home.
I attend monthly MS CHAT sessions and they have been a great support system for me. I can honestly say that if the CHAT sessions had been called a support group, I probably would not have gone. I have learned, and I have met some great friends. My CHAT friends understand what it is like to have those annoying sensations, to have numbness, to be unsteady, to fall, to be forgetful and to feel like you're going crazy. They understand what it's like to make the commitment to do your injections. They understand what tired really is. They understand MS pain; the feeling that your limbs are being cut with a hot knife; the feeling that they are being squeezed tightly, and the cramps and spasms. They also understand how to find the humor in MS, how to find the positives. It really is true: you don't "get" MS until you get MS.
What matters to me now is doing everything I can to aid in the research and education about MS. I have things I want to do in my lifetime, and being knocked down by MS is not on the list. Although I am unsure of my path at this time, I'm sure I can find a way to have an impact on someone's life and to be a part of the movement for a cure for my MS. Maybe it will start with my story helping someone else. n
Heather Hancock works at Northeast Rehab Hospital, Salem, NH.