Newly Diagnosed

Every journey has a beginning; though,  I do not necessarily believe every journey has an ending.  A journey often breeds a purpose, and within a purpose grows a life.

I was unofficially diagnosed with RRMS (Relapse Remitting Multiple Sclerosis) in December of 2010; the official diagnosis came in April of 2011.  Unlike many people given this diagnosis; I wasn’t shocked or angry; sad or confused. I wanted knowledge. I truly did not understand what that diagnosis meant and I intended to find out.  You see; i had this intrinsic need to understand and make sense out of the chaos that became my life.

Lets go back a bit.  2010 was a stressful year for me. My husband and I separated and I took an apartment near where I work.  I won’t go into the details of that because they aren’t relative to what became of me; all I can tell you is that at 38 years old; I had already had one failed marriage and seemed to be on the brink of another.

During that first month, I began to experience strange, random, symptoms that were interfering with my ability to work; though at that time, everyone thought it was stress. My doctor advised me to take at least three days off of work and rest.  This was hard for me; I acknowledged how scary the idea of being alone with nothing to do but face my thoughts would be.  At least at work I could ignore my feelings and throw myself into my job.

Over the course of the next few days my body began to wage war on me. I had what I thought was a bladder infection, but tests showed no indication of such. I had vertigo and fell several times. My blood pressure shot up and then dropped very low. I had unexplained pain in the form of electrical sensations and burning in my legs and feet. The day I was scheduled to return to work, I passed out twice while getting ready. Unsure what to do, I decided to go in to work anyway, I had missed so much and the doctor would probably just tell me it was stress.

I arrived at work feeling like I was hit by a bus; shaky, weak and extremely fatigued. I called the doctor and was told that I was to immediately go in for an exam; based on what had happened. I arrived at the doctors office completely unaware that my life was about to change.

The doctor took my blood pressure and did an initial exam then told me I had a choice; I could go by ambulance or I could have someone take me but either way I was going to the hospital. Now see; I live in a small town where everyone knows everyone, except me, I was new to that area because of the recent move, so the doctor offered to call my boss and ask him if someone could take me to help save me the cost of the ambulance. My boss came and collected me and drove me to the hospital, then waited with me while I was admitted.  I came to be very grateful for my boss and the job I had.

At the emergency room, I was given heavy doses of morphine (mistaken drug choice as it does nothing for headaches) for the blinding headache I was experiencing. They did a CAT Scan, and an MRI and several tests to make sure I wasn’t having a stroke. The MRI showed several lesions. At this time, there were a number of theories and because they were a small clinic type hospital; I was transported by ambulance two hours away to Kansas City where they were better equipped to “handle the worse case scenario”. The Emergency Room staff decided they needed more information so they proceeded to do a spinal tap.  I was not aware of what a spinal tap involved but they had an attendant hold me down and without explanation or medication they did the procedure which was unsuccessful. He tried twice more and twice more he hit the nerve which caused pain and shock sensations to race through me. They finally gave up when I glared at the doctor and said “haven’t you gotten what you need yet??!!” and admitted me to the heart and stroke floor with plans to do another series of scans and repeat the spinal tap at a later time.

Mercifully; they changed my medication from morphine to a combination of drugs that I do not recall but it took away my headache within a short period of time. For that much, I was grateful.  Those nurses were my heroes that day.  The day I was to be discharged, they told me about the white matter lesions on my brain, and that, given their location, and my symptoms, MS could not be ruled out.

I would; over the next month see a series of neurologists and have a battery of tests run. The final conclusion came from an MS specialist in Columbia, MO after reading my records. I’ll never forget: “yes,” he said “everything is consistent with MS”. With that; he gave me my diagnosis. He also told me that along with many lesions, there was also a significant amount of grey matter deterioration. He; very simply and as a matter of fact stated that, RRMS is the initial diagnosis and that generally within 15 years of diagnosis all MS patients see a decline in function.  It was all so routine for him.

I had very little feeling; just a need to know. I went home and began pouring through dozens of sites, blogs, message boards. I needed to know what my fate would be.

This was the start of my journey in living with MS.

About Kotori_kim

"i owned the world that hour as i rode over it. Free of the earth, free of the mountains, free of the clouds, but how inseparably i was bound to them." ~Charles Lindbergh
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6 Responses to Newly Diagnosed

  1. There is something VERY wrong with those drugs that are supposed to “help you through rough times.” My mother was taking one of them (likely Paxil), and ended up having Bell’s Palsy. That’s when all the scans were done which showed the MS.
    She had a spinal tap too, earlier this year. It was unsuccessful. She was in terrible pain, and couldn’t take it any more. They need to find another way. I don’t even think the spinal tap was necessary. It was already clear that MS was the correct diagnosis. *sighs*

    • foxfires71 says:

      A Spinal Tap is not necessary to confirm a diagnosis of MS. It does however provide another piece to the puzzle as MS is a difficult disease to diagnose and treat. I’m sorry to hear your mother had so much trouble; the journey can be very frustrating.

  2. Solivita says:

    Long story short…I started with severe dizziness and eye pain in July 2011. Saw two neurologists, second specializing as my MS physician. MRI showed lesions (white matter). All tests were negative for the MS “mimics” including the evolved potential testing, MRA and the MRI of my spine, thoracic and cervical. I am classified as “probable MS” and now my doctor is suggesting a LP. I don’t want to have the spinal tap but with only a positive/abnormal MRI, do I have a choice? As mentioned, the “O” bands may not be present at this time for me. I am totally in limbo-land and although I had a 3-day solumedrol infusion for my eye, I am on no treatment and feel like I should be. I am a diabetic, have sleep apnea and have had symptoms for over two years which I ignored.

    • foxfires71 says:

      I’m sorry to hear of your long and difficult road to diagnosis; it’s one we’ve all traveled. The spinal tap (or Lumbar Puncture as its also known) is another piece of the puzzle in diagnosing. I can tell you that; with the right doctor who’s capable and experienced, it is not as awful as it is often made out to be. My first experience was horrible (an inexperienced intern tried to perform it on me in the ER while an attendant held me down; I was dehydrated and in severe pain at the time; it did not go well). The second attempt was with a very experienced doctor, I was well hydrated, and they took the time to address my fears. It went well and I hardly felt anything. As with any concerns; I would discuss yours with your Neurologist. I hope you find your answers soon. -Kim

  3. Pingback: About My Fight With MS | livingms

  4. Pingback: The Ongoing Fight With MS | Team iDentifi - bikeMS

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