Everyone with MS has a story. Here’s mine.
I do not want pity. I share my story simply to help others...either to better understand MS or to help someone realize that what they might be going through could be cause for concern and needs to be discussed with a doctor instead of ignored.
I am starting at the very beginning so it is rather long and detailed…so bear with me and enjoy! :)
On June 8, 2003 at 1:23 PM, I went to get up off the loveseat to get water and some orange juice. I had gone out the night before to celebrate my 23rd birthday and thought water & OJ would help me feel a bit better. I wasn’t hung over, but wasn’t feeling good either. As I sat up and began easing myself off the loveseat, everything around me started spinning uncontrollably and I fell back into the loveseat. Within a matter of seconds, my father and brother were kneeling at my side. My father had me lay down. We all hoped the uncontrollable spinning would be over quickly. It took roughly 10 minutes for the spinning to slow down enough that I could move to the couch and lay down fully. However, the spinning didn’t go away, it merely slowed down. I slept for probably 4 hours afterward. When I woke up, I was still extremely dizzy and the feelings of fear and panic quickly loomed over me. I saw my doctor at Kaiser Permanente the next day. It was a disheartening experience to walk through the halls clinging to my father just to be able to walk. The doctor told me that I had experienced a vertigo spell. He explained that sometimes it can last up to 7 to 10 days. He said that meclizine (aka Dramamine) would help control the dizziness until it subsided. He also had my blood drawn to rule out any other, more serious issues. Over the next two weeks, I went through countless little containers of Dramamine hoping that it would help with the dizziness since the doctor said it would. After 14 days, I was still dizzy, had tinnitus (ringing in the ears) and the Dramamine had done nothing to help me. I made another appointment with the doctor and he admitted he was a bit baffled that the dizziness hadn’t subsided. He drew more blood to run more tests and said that this could be a case of Meniere’s Disease, which he found strange because I was so young. He referred me to an ear, nose, throat (ENT) specialist for further testing and diagnosis. (Meniere’s Disease is a vestibular disorder that produces a recurring set of symptoms as a result of abnormally large amounts of fluid called endolymph collecting in the inner ear. It usually affects people in their 40s and 50s. More info can be found at http://vestibular.org/index.php). I went to the ENT specialist and was told that I had Meniere’s Disease and was given a prescription for 2mg Valium. I continued to work full-time and care for my 3 year old twins while on 2mg Valium over the next 8 months or so.
My chronic dizziness was the worst in the first year. Most days, I felt like I was walking on a boat. There were days when I would have severe attacks of vertigo and other days I’d have minor attacks of vertigo. The scariest attack happened within the first year. I was sitting on my father’s bed, in the middle of a conversation with my brother and all of a sudden, I couldn’t hear anything and I couldn’t talk. As I started to get off the bed to head to the bathroom (dizziness can make you nauseated), my brother headed to get my father. I crawled to the bathroom and passed out on the floor. I don’t remember anything after that. However, my brother and father have told me stories of things I said as they were moving me to the couch. I slept for almost 5 hours after that attack. I saw the ENT specialist shortly after that attack. When I mentioned it to him, he didn’t seem surprised and he didn’t mention anything about taking an MRI or changing medicines. I stopped taking the 2mg Valium because it wasn’t doing anything for the dizziness…just made me not as anxious or worried about the attacks. Plus, with addiction on both sides of my family history, I didn’t like the fact that Valium is addicting. Luckily, my employer switched health insurance companies and I was able to get away from Kaiser Permanente. I found a new primary care doctor and was able to start fresh. He immediately referred me to a neurologist for additional testing and insight. I was still dizzy, continued to have tinnitus and had developed migraine headaches. My appointment in 2004 with the neurologist was much more productive. The neurologist did a “tilt test” (can’t remember the exact name) and various other tests. He also ordered an MRI (no contrast). He wasn’t sure Meniere’s Disease was the proper diagnosis even though my symptoms fit the definition. He also referred me to see “the dizzy doctor” (an otoneurologist that specializes in dizziness) for additional testing. The blood work & MRI didn’t show anything out of the ordinary. He told me that my MRI had one little white spot on my brain that was indicative of migraines. When I met with the otoneurologist, I took several different tests that are commonly used to determine balance disorders – Electronystagmography (ENG), Videonystagmography (VNG), Caloric Test and Hearing Test. The otoneurologist told me that I didn’t have documented progressive hearing loss that is common with Meniere’s Disease and therefore, didn’t have it. She told me that I had migraine induced dizziness. She explained that the dizziness can be present even if the headache part of the migraine isn’t. During the next year, I had follow-up appointments with both the neurologist and otoneurologist and tried many different medications to reduce my dizziness & anxiety about my dizziness. I also mentioned that I felt like I was losing my hearing, especially if any kind of background noise was present, but none of my hearing tests were reflecting this.
At this point in time (2004), I was getting frustrated because I was dizzy and had tinnitus 24/7/365, had hearing issues that weren’t showing up when tested and had frequent pain/fullness in my left ear. I was also coming to the realization that maybe…just maybe…doctors don’t know everything (gee, ya think?! LOL). I wasn’t sure that I could continue working and was seriously concerned about the future. I actually started down the path of applying for SSDI, even went to “their” doctor for testing and then ended up withdrawing my application (hindsight…I should have just continued). 2005 and 2006 were pretty uneventful and I am thankful for that. I continued my follow-up appointments with my neurologist, but not the otoneurologist. My migraine headaches weren’t frequent like they had been in 2004, but my dizziness, tinnitus, ear pain/fullness & hearing issues continued 24/7/365. However, by this time, I had learned to manage & live with these issues. At one point in 2006, I asked my neurologist if he thought we should take another MRI just to check on things….he told me NO because things were going well. (I think he wishes now that he had ordered the MRI…maybe my MS could have been caught sooner…hindsight is always 20/20 LOL). I was happy as a popcorn fart that things seemed to be on a decent track in 2006. However, in 2007, vertigo spells and migraines started showing up again….GREAT…NOT! After working at a new place of employment for about 8 months, I had to disclose my issues. Luckily, the vertigo spells & migraines weren’t any different than before…at least this was true until 2008.
(Get ready for the GOOD part LOL)
On Sunday, June 1st, 2008 at 12:31am (okay technically June 2nd)…I was woken up by the most excruciating headache that I have ever experienced…ever! It felt like the left side of my head was 10 times its size and felt like it was going to explode. It also felt like the lower portion of the back side of my head was being squeezed….like there was pressure that needed to be relieved. At the time, my father was living with me and I woke him up to help me figure out what was going on and what to do. I immediately took 800mg ibuprofen and got on the phone with the 24 hour nurse line from my health insurance company. The nurse recommended going to the ER. I was in so much pain that I laid down on the couch and was moving every which way to try to get comfortable. The ibuprofen wasn’t even close to touching the pain I was feeling. I also called the on-call neurologist from my neurologist’s office and was told to go to the ER “if I felt it was bad enough to wake up a neurologist in the middle of the night” (he wasn’t friendly and pissed me off with that statement). After about an hour, the pain wasn’t changing and I started calling a close friend to come get me and take me to the ER. About 20 minutes later, my friend was on her way over. A few minutes after I got off the phone, I threw up and the pain was reduced. About 10 minutes later my friend showed up and we headed to the ER while my father stayed home with my kids. Luckily, the ER wasn’t busy and I was seen almost immediately. I went through my story, history, list of meds/vitamins, etc. with the nurse. She started me on fluids and within a few minutes, the doctor came in. The ER doctor told me that I had a tension headache (HA!) and offered to give me some more fluids and headache medicine…I declined and went home. By now, it was June 2nd (Monday) and I called in sick to work. I slept almost all day afterward. When I woke up, I felt weak, extremely dizzy, had blurred & double vision, had ringing in my ears (tinnitus) and was exhausted. I called my primary doctor & neurologist to schedule appointments. I knew that what I had experienced was NOT a tension headache. I knew that there was something serious going on and I had to find out what it was. I was scared that I could have a brain tumor like my mother had passed away from 8 years before because it had started as a headache and by day # 3, she couldn’t even dress herself. My appointment with my primary doctor was scheduled for June 4th (Wednesday) and the appointment with my neurologist was scheduled for June 25th. Later that evening, I had another headache…not as bad as the first one, but the only thing that made it better was throwing up. This second headache lasted about two hours and ibuprofen didn’t touch the pain again. However, I noticed after it subsided that the left side of my face was sort of numb….like that feeling you have after going to the dentist and the novacane is wearing off…not completely numb, but very weird. The next day was June 3rd (Tuesday) and I (stupidly) went to work. I worked all day and had discussions with my co-workers about everything that had gone on since Sunday. Within a few hours of coming home from work, I had another headache. Headache # 3 was very similar to the second one so I was thankful my doctor appointment was the next day. On June 4th (Wednesday) I was thankful to have a mini-vacation previously scheduled and was able to sleep in and get ready for my doctor appointment without rushing. When I went to see my primary care doctor, he understood my concerns about these horrible headaches, the severity of dizziness they had triggered along with the numbness affecting the left side of my face. He ordered a CT scan to see if anything would show up with the main concern being to rule out internal bleeding in my brain. I had another headache several hours after arriving home from my doctor appointment. Headache # 4 wasn’t as severe as the first three and was more like a migraine. On June 5th (Thursday) I had another headache in the morning that was more like a migraine. To me, this was a good sign that whatever had caused the first three…had settled down a bit. By this day, I had also noticed that there was a lingering pulsation that wasn’t going away…along with the continued headaches, severe dizziness, blurred/double vision, nausea, numbness in the left side of my face, weakness, exhaustion and tightness in the lower back portion of my head. On June 6th (Friday) I went and did the CT scan…drove myself and shouldn’t have because for some strange reason, it made me extremely sick and dizzier than I already was. I managed to safely drive myself back home and slept for several hours in order to recoup. Around 5pm I received a call from my doctor’s nurse and was told that there was nothing on the CT scan that was alarming. Good new for the weekend! The next day was June 7th (Saturday) and my 28th birthday. For the first time in a week…I didn’t have a headache…a birthday present to celebrate. We didn’t do anything big for my birthday…just took it easy and enjoyed time together as a family (me, my kids, brother, and father). Over the next 18 days, I worked during the week and slept a ton in the evenings and on weekends. Also, we either ate microwavable meals or fast food because I couldn’t cook. I didn’t have another major headache, the tightness affecting the lower left side of my head had subsided and the numbness affecting the left side of my face had gone away by June 14th. However, I was still experiencing the pulsations, dizziness, vision problems and exhaustion.
I saw my neurologist on June 25th. We went over everything I experienced in the last 25 days and he reviewed the CT scan. He saw a white patch on the left side of my brain and ordered an MRI (with and without contrast) to be done asap. I had my MRI on July 1st. My neurologist called me the next day. I will never forget…I was at work and it was a little after 5pm. He asked me if I was sitting (never a good thing to hear at the start of a conversation with a doctor). I told him no, but that I would go sit down at my desk. He explained that demyleination had occurred and that I may have Multiple Sclerosis. He had to explain what demyleination was because I had never heard of it before. He told me that with the size and location of this demyleination…I shouldn’t be seeing, hearing or walking. He told me that he was shocked that I was doing all three because he’d never seen anyone with lesions like mine that were able to. He wanted to schedule an appointment asap to discuss everything. I was thrilled that I wasn’t dying, but at the same time, I was a bit concerned about what he said. I saw my neurologist again on July 10th and brought my brother with so that I wouldn’t miss anything. We reviewed my MRI images and he showed me various different lesions. He explained that he was pretty sure that I have MS, but to be absolutely sure, I would need to have a lumbar puncture (spinal tap) and he would like me to get a second opinion from the head of neurology at University of Colorado Hospital (because he studied under him). I had my lumbar puncture on July 14th and that was not a fun experience. As soon as the needle was inserted where it needed to be and spinal fluid started draining, I got hot, sweaty, extremely dizzy and felt like I was going to throw up. I had one nurse on my left holding a cool wash cloth on my forehead and another on my right holding a puke tray while the technician tried to get spinal fluid out of my back. Normally it doesn’t take long to get the necessary 10cc’s of spinal fluid needed to test for MS. However, (if you haven’t already noticed) I don’t do anything the “normal” way…the technician got 2cc’s of fluid and started asking me if I had drank enough water and various other questions in an attempt to figure out why he wasn’t getting more. I had to lay there with the needle in my back, staying as still as my body would allow (not easy when it wants to be shaky) while he called the head technician to come down and try to get more spinal fluid from me. They were “digging” in my back for 45 minutes until they finally gave up. I overheard their conversation as they were trying to figure out how to get more spinal fluid from me. The technician asked the head technician if they should move the needle “down one” and the head technician said no because it was in the exact spot it should be. Toward the end, they explained that they will only run the most important tests with what they were able to get. Afterwards, I was moved to outpatient recovery for monitoring because you can get a really nasty “spinal headache” after a lumbar puncture. Luckily, I didn’t get the “spinal headache” and was released to go home about an hour later. On 7/22/08, I got a call from my neurologist with the news that the results of the lumbar puncture were back and confirmed MS. We agreed that I would start disease modifying therapy right away, even though I couldn’t see the head neurologist at University of Colorado Hospital until October 2008.
I started Copaxone on 8/6/08. By this date, I had stopped at the library and picked up every book possible about MS. Most of them were outdated, but I did find one called “New Hope and Practical Advice for People with MS and Their Families” by Louis J. Rosner, MD & Shelley Ross that was good. I also watched the DVD about Copaxone and felt that I had made the best choice for disease modifying therapy to fit my lifestyle as a single mother raising twins and working full-time. Over the next several months, I got used to taking my shots and continued to work full-time. In October 2008, I met with the head neurologist at University of Colorado Hospital for the second opinion diagnosis. He confirmed that there were 9 lesions on my brain, three of them primary. There was no doubt that I had MS. In fact, he stated that I had never had Meniere’s Disease and that it had been MS since 2003. This statement prompted me to spend the next six months trying to prove him wrong. I wasn’t able to prove him wrong and finally accepted the fact that I had MS since 2003 by April 2009. Going backwards a bit, in November 2008, I attended MS101, a course offered by The Rocky Mountain MS Center, and found it to be helpful in understanding my chronic illness. In December 2008, my kids got me a cane for Christmas. In February 2009, I met with a new ear, nose, throat (ENT) specialist. I liked this ENT because he actually listened to me. He actually sat down and showed me the hearing test and why I didn’t actually have hearing loss. At first, he said that the pain/fullness in my left ear was from TMJ and clenching my jaw. However, later in the month I went to a dentist appointment and there were no signs of this on my teeth and therefore proved that theory wrong. We discussed the hearing loss that I have experienced since 2004 and he mentioned something called Auditory Processing Disorder (APD). He explained that it is more commonly associated with children than adults, but it fits what I described. I went home and read information about APD and for the first time in 6 years…I knew that it fit perfectly. APD is how my brain processes what I hear and since one of my three primary lesions affects hearing…it fit! The down-side is that there isn’t an effective way to fix APD or make it better. I can’t just wear a hearing aid and be all better. Instead, I have to constantly ask people to repeat themselves and avoid background noise whenever possible.
In March 2009, I did a presentation about MS at work for MS Awareness Month. As I got up to do my presentation, I was fully prepared to stand for the next 5 minutes. However, my legs had a different idea. As I looked out over the crowd of my co-workers, I got nervous for a second and my right leg started shaking uncontrollably and I was forced to sit on a stool that was near me. This was a new development. I had noticed my hands would get shaky when I would do my shots in my hips, but had never experienced shakiness in my legs. I mentioned this development to my neurologist, but he didn’t seem to think much of it and I remained on Copaxone. The next major event was my annual MRI (with and without contrast), which occurred in November 2009. A few days later my neurologist called with the news that there were no new lesions and no activity in my existing lesions. Through 2009, I continued to read books about MS and work full-time (even though I probably shouldn’t have). My children and I got used to the idea that MS was part of our lives. Their chores increased and I had to let activities and things go by the way side. I would spend the weekends sleeping while my kids cleaned, played games on the computer, watched movies and basically fended for themselves. Toward the end of 2009, I was able to have a functional evaluation done. When I received the results of my evaluation, I cried for several hours. Even though I knew MS had affected many areas of my life, it was rather upsetting to see everything that MS had affected documented in a 27 page report. In December 2009, I had 14 days off from work for Christmas vacation. It took 10 of those days to really start feeling better and this was when I realized how sick working was making me. I was spending all of my energy (the little amount I had) working and had nothing left for my kids and my home. It was very difficult to return to work on 1/4/10.
Over the next several months, my fatigue and dizziness got worse and I would come home from work, cry, take a nap, send the kids to bed and cry some more. By March 2010, I left work on short-term disability. On 4/2/10, my short-term disability was approved (thanks to the functional evaluation). I was able to take a vacation in June 2010 to attend a close friend’s wedding in Montana. The climate difference had an impact on my MS. I felt much better in Montana and realized that living in Colorado is keeping me sick. This was solidified once we returned home to Colorado from our vacation and I was immediately sick again. My kids and I made the decision that we would move to Montana within the next few years. On 7/12/10, I had a follow up appointment with my neurologist. It was hot that day and I was not doing well. My neurologist made note of this and began wondering if my MS had progressed to secondary-progressive from relapsing-remitting (which I think it has been since 2008 and have mentioned this to him before). I told him that I didn’t think that the Copaxone was working because of the shakiness in my right leg causing me not to be able to walk or stand for longer than 5 to 10 minutes. This had gotten worse since March 2009 and therefore, progression (even though nothing had shown up on my MRI in November 2009). My neurologist suggested switching medications to Rebif and I agreed. I started Rebif on 8/3/10 and have been on it ever since. I was happy that I didn’t have injection site reactions like I previously had on Copaxone. However, I was not thrilled with the flu-like symptoms and body temperature increase. I have continued Rebif for two months and these side effects have continued. My hope is that they will go away within the next month because the nurse and many others that have taken Rebif say they will. I also don’t like that Rebif can have an impact on my liver. I had my liver tested earlier this month and the results came back that one enzyme is slightly high, but stable and there is a note to re-check it in six months. I also don’t like the fact that Rebif (or maybe the side effects) make me crabby. I have been extremely crabby in the last month and my kids have said that they don’t like how crabby my medicine makes me. Plus, I’m not sure that Rebif is working. From 9/21/10 to 9/27/10, I experienced a squeezing/tightness in the lower back left portion of my head. I am pretty sure this is the location of my biggest primary lesion and this has me concerned. I haven’t had a clearly defined exacerbation, but have noticed that my dizziness has been worse than normal. I left a message for my neurologist because I felt it was important to mention this squeezing/tightness. I hoped that he would order an MRI to check for lesion activity. The only other time that I have experienced this squeezing/tightness was in 2008, right after my headaches/initial exacerbations. Unfortunately, my neurologist called back and stated that the squeezing/tightness isn’t usually associated with exacerbations (yeah right!) and that he didn’t feel it was necessary to order an MRI or see me sooner than my scheduled appointment on 10/8/10. Although I’m disappointed with my neurologist’s handling of this, I will wait until 10/8/10 and have a discussion with him at that time.
Thanks for reading! I hope that this has given you a better understanding of MS…at least from one person’s perspective and experience.