My name is Audrey Fisher Killen and I am the Founder and Executive Director for Operation Shooting Star. In November of 2009 I was diagnosed with Multiple Sclerosis, an autoimmune disease…this is my story.
They say stress can be a major trigger for Multiple Sclerosis episodes…that made perfect sense considering it all started the week my Grandmother passed away. It was August 4, 2009 and the fingers on my right hand started to feel tingly. It was the same exact feeling you get when a limb ‘falls asleep,’ then you shake it or move around and it goes back to normal. Only this feeling didn’t go away. I kind of brushed it off until by the end of the week it had worsened. The tingling and now numbness had remained in all five fingers, continued through my hand, up my arm and down the right side of my back. Thursday, August 12th I called my family doctor first thing in the morning…at this point I thought it must be a pinched nerve and she suspected the same based on my explanation of symptoms. Over the phone she advised I go to my Physical Therapist and have them evaluate the situation. ‘Sounds good’ I thought because I had a trustworthy relationship with my PT and felt extremely comfortable that they would be able to fix me or send me in the right direction. After a two-hour complete physical evaluation, nothing had changed. ‘Off the record,’ my PT said, ‘I think this is more serious than anything I can fix.’ Something we’ve done should have made some difference, even if only a little’ – but it hadn’t. He suggested I go back to my family doctor and ask what the next step should be…he would be sending her a complete report on everything we went over. The very next day I called my family doctor again. Baffled by the fact that my physical therapist couldn’t do anything, she then says, ‘what kind of Physical Therapist says they can’t fix you after only an hour?! Maybe you need to find a new Physical Therapist! It is muscle spasms; I will call in a prescription for muscle relaxers.’ At this point, I had to listen to her although I was taken aback by her comments; I had no other ideas or leads.
Friday I picked up the medicine, by Saturday night I was sick to my stomach and on Sunday I quit taking them altogether. The tingling and numbness was still going strong…nothing had changed or improved. Frustrated, I realized that if this was going to be fixed than I had to be proactive. I then remembered having a similar feeling in 2005 and going to the Chiropractor. After a few visits, that feeling had subsided-we chalked it up to being a sciatic nerve problem and moved on. (Even though there is no way to prove it, myself and doctors think maybe that was the first MS episode I had experienced and coincidently the symptoms subsided right around the same time I stopped seeing the Chiropractor.) So, first thing Monday morning I called him. I explained everything and he said right away that if this didn’t get better or change at all within 3-5 visits than we would have to get a second opinion. After the fourth visit and no improvements, we both decided it would be best to see my orthopedic doctor since the only explanation at this point seemed to be Carpal Tunnel. This made sense considering by now I had had an office position for three years. Once I got an appointment with my orthopedic doctor, he ordered a nerve test. The nerve test showed that the symptoms going on were not a result of Carpal Tunnel but in fact seemed to be coming from my neck. My orthopedic doctor then ordered an MRI.
Once the MRI results came back, the doctor called me in for an appointment. Ironically, by this time the tingling and numbness had subsided slightly in my hand and arm but began even worse in my left leg. Completely compassionate and patient, he then explained that the MRI showed two white spots on my spinal cord, in the neck area, which appeared to be plagues…possibly a sign of Multiple Sclerosis. To be quite honest, I had no idea what Multiple Sclerosis was except that Montel Williams had it and ‘it’ was referred to as ‘MS’. Calmly, the doctor explained that if it was indeed Multiple Sclerosis than I would have to begin seeing a neurologist.
Once I got in to see the neurologist, she ordered blood work and more MRIs which would be specific to my brain and my entire spinal cord. Finally, I was starting to feel confident that I was moving in the right direction towards finding an answer. She made it very clear that she would do everything to narrow it down and find out what was going on. I was immediately impressed by her level of expertise and knowledge while she remained compassionate and thorough. As we began to venture down the road of discovering the problem, it was explained to me that if it was Multiple Sclerosis then the identification process would not be ‘black and white.’ As with so many Autoimmune Diseases, the symptoms resemble those of many other illnesses. So, in order to properly diagnose, it had to be a process of elimination. Results came back from the blood work and MRIs and even more signs pointed towards Multiple Sclerosis. Still my doctor was not convinced it was enough to start me on medicine and send me on my way. I really appreciated the fact that she was willing to spend the time and extra effort to truly make sure because she knew that a diagnosis of this degree would be life changing for me. The next step would be for me to get a lumbar puncture, otherwise known as a spinal tap. At this point, this would be the only other effective way to really narrow it down to MS…it had to be done. I remember feeling scared for the first time in this whole process, but it wasn’t of the outcome but of having the procedure done. I was not okay with having a needle injected into my spinal cord and extremely worried about the risk that goes with having this procedure done. I believe this is when reality really started to set in about how serious this whole situation was and could be. But, I went through with it desperately trying to figure out what was wrong with me. The results came back and again, more signs pointed to MS. So, my doctor and I discussed the prognosis and both agreed that something of this magnitude definitely required a second opinion from a specialist. My first thoughts were that if I was going to go through all of this with such a major disease looming over me then of course I wanted to see the best. I wanted to make sure that a second opinion was as accurate as possible…I immediately thought John Hopkins. I called right away and by the time I was even able to speak to the right person they informed me that I wouldn’t be able to get in until April, it was still only November. Waiting that long after getting to this point so quickly felt like it would only be taking steps backward. Meanwhile, my neurologist was already setting something up for me. We spoke and I let her know about the wait to get into John Hopkins. She told me she was able to schedule an appointment for me to the see the director of the MS Center at the University of Maryland in just three weeks. Though excited about the quick appointment time, I was hesitant not knowing anything about the University of Maryland. She reassured me that I would be in very good hands and that she felt it was extremely important that I see someone sooner than later. I trusted her and so we went with that plan. Before my appointment came, I made to sure research the MS Center and the doctor I would be seeing. Low and behold, he had not only studied at Harvard but completed his residency at John Hopkins and had been a professor there before taking over the MS Center at the University of Maryland…I would have to agree that I would be in good hands.
The morning of the appointment my husband and I drove to Baltimore. I was eager to hear what answers the specialist may have but he decided, as my neurologist had, that he wanted to rule out everything else before committing to the fact that this was Multiple Sclerosis. He reviewed everything my neurologist had found with the original blood work, MRIs and spinal tap that I had already gone through. He ordered more MRIs to be done a month from that time to see if there was any difference or extra activity. As I left the appointment, I went directly to get more blood work done as well.
This part is hard to explain. I was disappointed that I had to leave the office without a concrete diagnosis and prognosis. For months I went without knowing and with no answer in sight. Though of course I did not want to be diagnosed with any disease, by this time I was so frustrated. I was eager to figure it out so I could just move forward and do something about it, whatever it was. But, I was beginning to understand the mystery that came with having an autoimmune disease and appreciated that both of my doctors were willing and patient enough to be thorough.
The holidays came and went; I had three more MRIs done in January. I am not sure exactly when but I do remember exactly where I was and what I was doing when the specialist called me to tell me that after reviewing the most recent MRI and blood work reports that there was no other explanation for what was going on than Multiple Sclerosis. On February 9th my husband and I drove back to the University of Maryland in Baltimore to discuss treatment.
Again, not being able to fully explain why and feeling guilty about it, I felt relieved after leaving that appointment. Finally, I knew what the problem was which meant I could move forward after what felt like standing still for the last six months. I felt really good knowing that I was under the care of two awesome doctors. Both of them made me feel extremely confident that I was in the best situation I could be in considering the circumstances.
My doctor in Baltimore and I agreed on a medicine that should be the best for me factoring in the level of Multiple Sclerosis that I had, Relapsing-Remitting. This meant that the episodes I experience would come and go. The medicine was supposed to keep flare-ups from happening as much as possible and if they were to happen, it was supposed to help me recover as much as possible each time. Three weeks after my appointment a nurse came to the house and stayed for four hours explaining and training my husband and I on everything about the medicine and how to use it. That afternoon, I gave myself the first injection and from then on, with the help of my husband, have been doing it every other day. At this point I realized I had two choices - mope on the couch or get up and try to find the light at the end of the proverbial tunnel. At first one of the things that made me upset was that the injections were leaving bad bruises on my legs and I wouldn’t be able to wear a bathing suit in public…then I laughed at myself. “Audrey, you don’t feel comfortable wearing a bathing suit in public anyway so who cares-this is bigger than bruises on your legs.” PS- until I really got over that part of it, I found peace in the fact that it was still cold and I was wearing pants. Then, I decided that moping was unproductive and that I would only spend my time thinking about the reality of this disease…the fact that it could lead to the loss of my mobility, sight, speech or all those things and more. How could that happen to me? I had been an athlete and actress my entire life and sports and theatre were what kept me going. This thinking I knew would inevitably send me in a downward spiral to utter depression. I had to focus on the potential solutions to Multiple Sclerosis rather than the potential problems and if I was going to deal with this productively then I had to understand every aspect of it. Knowing that I really had to educate myself on what was going on in my body and with the disease in general, I began Googling everything under the sun. Coincidently, I found that the National MS Society was doing a walk right here on our very own boardwalk in just over a month-it was a sign. Great, I had something positive to focus on.
To this day, I really don’t know if I was just in denial about having MS or used it to get attention or really truly felt motivated but either way I was able to accept it as much as any human could I guess. Don’t get me wrong, I have my days and I do feel sorry for myself sometimes. Luckily, those days don’t happen that often and I believe it is because I have given myself positive things to focus on instead. So, with the support of coworkers, friends and family the process of ‘moving on and moving forward’ has finally begun…and I think I am going to be okay.