My Untold Story – Part III

After that prescription for the cervical spine, the saga with the receptionist at the neurologist’s office began. When I first started writing down, my MS story the back and forth with the doctor’s office was so painful, and I think some of my initial frustrations of the disease may have been misplaced. Therefore, I am only going to try as accurately as I can recall (It was just over a year ago this all occurred) list just the facts.

The neurologist had 2 offices – I will label them 1 and 2 to distinguish. It gets a little confusing.

  •  Called the hospital to schedule the MRI, and they said I needed an authorization number from my insurance, and said to get that from the doctor’s office.
  •  I called the neurologist’s office (1) and put in my request. I waited, about a week, and called back. She didn’t have the required number, but the next day she was able to provide it.
  • Made appointment for MRI 3/6/10
  • 3/6/10 – MRI completed00
  • 3/09/10 – Hand specialist wanted copy of the MRI report
  • 3/11/10 – Called Neurologist office (1) did not have the report
  • 3/17/10 – Received certified letter from neurologist office stating he tried to reach me 3/8 and /9 with no luck. Enclosed a prescription for post contrast MRI brain and cervical spine Immediately called office (1) neurologist is on vacation and was told no reasoning was left as to why the doctor prescribed new MRIs
  • 3/19 – Called back neurologist office (2) to see if they had received the MRI report to give to hand specialist. Said no so I asked if I could speak to someone about the note I received and I told I would need another authorization # for the prescribed MRIs. I receive the radiologist report I had been trying to get.
  • 3/20 – Tried to schedule the MRIs appointments but was given an old authorization #
  • 3/22 – I called office (2) and they said I would have to call office (1) to get a new number
  • 3/22 – Call office (1) no record of prescription in file will have to see what she can do
  • 3/23 – Nurse from neurologist office calls no info in file except the note the neurologist sent me
  • 3/24 – Office (1) calls says can’t get authorization # w/o more info so I fax her my copy of the MRI report.
  • 3/25 – Nurse calls back and says there is a suspected lesion on C2 and the doctor wants further testing to confirm. Office (1) calls with new MRI authorization #. Schedule appointment for testing a hospital. Call office (2) to schedule post MRI appointment made for 4/20
  • 3/28 – MRIs performed
  • 3/29 – Call office (2) saying I had prescribed MRIs completed and ask if I need an earlier appointment. They put me on Nurse’s list for call back
  • 3/30 – Had not received phone call from nurse. Called office (1) asking the same question as when I called office (2) the day prior. She said she would talk to the neurologist. Didn’t hear anything that evening called again said I would have to try in the morning
  • 3/31 –  Spoke with office (1) she was surprised no one had called said would speak with the MD directly. Later that day I received a phone call from office (1) saying I needed to come in as soon as possible. Made an appointment for 4/2 and was told to bring all MRI discs
  • 3/31 – went to the hospital to receive my disc which were given to me w/the radiologist report which read “The appearance of the cord lesion in the context of perientricular white matter lesions seen on concurrently obtain MRI examination of the brain is most consistent with a demyelinating process such as multiple sclerosis”

I remember reading that sentence in the hospital parking lot and just breaking down into tears. Almost 3 months from the onset of my original hand pain, I had an answer. Of course I still had my doctor’s appointment in 2 days. The next part of my story will further explain that appointment and how my life went on.

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My untold story – part II

The saga continues in part II …

Winter 2007, a pain and tingling in my fingertips won’t desist. No, it isn’t frostbite. In my typical fashion of dealing with any kind of medical problem, I let it ruminate until all I can do is complain. Seeking advice, I asked my father what he thought. Of course, he said that if it was that bad I should see a doctor. With finals approaching and the multitude of projects and papers that accompany the end of a semester, I put the medical visit on hold. I finally decided to go to an emergency care clinic because the pain wasn’t going away, and I had time. The doctor tested me in various ways. I touched my nose, I touched his finger, I pushed against his hand, I refluxed, and I walked. He had the nurses take some blood, and told me to take up yoga and deep breathing – I was stressed. Wow, I did not think taking a full class load and working part time would do that to a college student. Well, life went on.

The finger tingling and pain eventually subsided, well, until December 2009. I can’t recall the exact date it came back, or where I was, but I felt it again in my right hand. I took some advil and tried to move on, but on Christmas Day, the pain was excruciating. I remember taking a bag of frozen peas out of my grandma’s freezer to do anything to make it lessen. Every family member had a theory with the leading one being carpal tunnel. Even my uncle who is a rheumatologist swore it was from typing on my computer at work. I took his advice. I wanted relief so I went and bought a brace, and wore it religiously. A week later, it was New Year’s Eve, and I was out partying with my brace. I couldn’t work my hand properly as I was eating or hooking my bra. I recall all my friends say take off the brace – thinking the problem was that my brace was hindering me. The problem wasn’t the brace (I knew that full well) my hand just was not strong. It tingled and hurt, and the motions were not those exactly as I commanded. I told my mother enough is enough. I need to go to a doctor.

She has a hand specialist because she fell while walking the dog in 2004, and dislocated a finger or something (in the end the results of numerous surgeries is a hand that looks and acts like a claw). We thought it would be best to start there because I had no luck in the past trying to find the source of my hand problems. He agreed with my rheumatologist uncle and told me I had carpel tunnel, but wanted to verify by testing my nerves. He ordered an EMG – electromyography. Two weeks later, I arrive at the neurologists office. He goes in and out of the room several times, as all the stuff for the test isn’t in the correct room, and asks probably five times if it is too warm. He zaps me over 100 times with his little electrical wires, each time after the 50th saying just one more. He proceeds to poke me and tell me to remain calm as he is causing pain. The results – he sees no signs of carpel tunnel. Luckily, I had started to think back to December, I remembered that I had been rear-ended around the time the pain first started. As I told the doctor about this incident, he asked me several questions and thought it was best that I get a cervical spine MRI – magnetic resonance imaging – done just to rule out spinal injuries and a pinched nerve. This begins my dealings with my first neurologist’s office staff and a separate entry to follow.

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My untold story – part I

After being diagnosed with MS, I began processing the disease in the only way I knew how by writing.  I have broken down my experiences and hindsight into seven sections. Today, I will give you the first installment. I hope you enjoy.

My untold story.

ACT testing day, a huge moment in a high school junior’s life. For me, this day now represents more than a determination of which college I would be eligible to attend, but the start of a disease that would take years to diagnose. What I remember comes across mainly fuzzy, but with a small sense of clarity. I was choosing one of those dreaded letters A, B, C, or D and my hand would not cooperate. It wasn’t shaky, or painful. I just did not have the control that you master when you are three.  I completed the exam without the hand problem affecting my overall results, I scored one point higher than the previous time I sat for the test. However, upon trying to explain what happened to my parents, it was like trying to nail into a piece of cement, not going to happen. Life went on.

Later that year, I was privileged enough to travel with my French class to France. The scheduled 10-day voyage would test our language skills, and provide us with memories of a foreign land to cherish. I was so excited for this July trip that I wrote off and hid my small bouts of dizziness, believing I just needed to take better care of myself. I was also having trouble walking; my left leg felt like it was dragging, and I sometimes had to focus very hard to make it work naturally. Again, explaining this to my parents seemed like explaining calculus to a five year old. So I wrote it off. That is until, the day before the trip I was so light headed I passed out (not long, just enough for a scare). My dad took me to the doctor who, after performing some typical neurological tests, believed it was best if I go and get a CAT scan, and have some blood drawn. I remember the drive vividly from the doctor’s office to the ER. Tim McGraw’s “Live Like You are Dying” played on the radio, and the tears flowed freely, as my mind raced through possible scenarios, and my father explained the situation to my mom. All I wanted was to travel with my best friend to explore a culture I had learned so much about, not be on my way to find out something was seriously wrong with me.

We got to the hospital, and I was brought back to a large machine. I laid flat on my back and had to look up at a cross (at least this is what I vaguely remember). The test did not seem to last very long, but the waiting felt like it was forever. The doctor cleared me before we left the hospital, and off to dinner we went. I was still waiting for the blood work results to come back from my doctor, but the biggest scare was through, or so my family thought as we ate dinner, laughed, and carried on with life. The next day I boarded the plane to France with some extra granola bars, because the diagnosis was that I needed to eat better, and more often. Life went on.

Have you ever been to an amusement park on those hot days where the sun melts you? Picture me standing in line waiting about 40 minutes for one of the best rides in the park. Super excited, and pumped to be getting pretty close to the starting gate, I couldn’t let on to my friends that I wanted to get out of line and buy some water. What kind of amusement park goer would I be? Instead, the voices swam around my head into a high-pitched whistle, and down, down, down I went. The next thing I recall is this very kind woman offering me water, and it being poured over my head, and my then boyfriend of less than a month whisking me out of line and onto a bench. My other friends ran to find me a sports drink as I regained stability. After everyone felt that I returned to normal, we trekked on and rode all the rides, especially the one where we had to get out of line. There was some concern when I arrived home, but we all assumed I was just dehydrated. Life went on.

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Getting to know me

Welcome to my blog, Life Obstacles. I’m a young female living with Multiple Sclerosis,  MS. “Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity, and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are moving use closer to a world free of MS.” – From the National Multiple Sclerosis Society.

I was diagnosed when I was 22 years old in hindsight had many signs and symptoms of the disease since high school. Later posts will explain in more detail my diagnosis story. Currently, I feel lucky as the disease has been mild, and my physical abilities have not changed.  I am determined as ever to maintain a positive outlook on life. The diagnosis has not slowed me down, but forced me to challenge myself both physically and mentally. I often think of it as a curse for the emotional toll the uncertainty of MS brings, but a blessing for those reasons mentioned above.

I hope you will follow me on this journey as I report my reflections and complaints about MS and the obstacles it creates in my life.

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