Monday, January 16, 2012

The Diagnosis

For the past five years I have had a mysterious illness which slowly began to take over my life.  After the birth of my youngest daughter I developed a severe case of postpartum depression and then severe migraines.  My doctor treated me for each, but the migraines became increasingly worse.  I was then sent to a neurologist who diagnosed me with Chronic Migraines and I began to take a daily medication to reduce the migraines.  This worked for awhile but soon began to become increasingly worse.  On each CT-Scan the results were normal.  I then began to experience other symptoms such as numbness and tingling of the hands and feet, blurry/double vision, and severe fatigue.  Again, the CT Scan showed normal and all blood tests were normal as well.  So, the doctor sent me to physical therapy for my neck and back.  This began to help decrease the migraines.  Things began to get better and then seemingly overnight the migraines returned with a vengeance.  This time the doctor sent me to physical therapy for the neck and back.  Again after awhile things began to get better, but this did not last for long.  In January 2011, I became very sick, missing endless days at work.  The CT scan and blood work still came back normal.

In April, 2011 I finally had to quit my job because I was just too sick to work.  After a few months at home I started feeling a little better and I attributed this to less stress.  Then in August, 2011 I had a migraine that lasted over 15 days.  After several doctor visits and trips to the ER, I was admitted to the hospital.  I was told I had  Status Migrainosus which are prolonged, resistant attacks resulting in incapacitation.  I was treated with DHE and after a few days of treatment the migraine began to subside.  I was sent home with a few prescriptions including one for Vistaril.  I was told to take the Vistaril every four hours for the next few days and then slowly taper down to one pill a day.  After I had taken a few pills I noticed that my face was becoming numb and swollen. I called the neurologist frantically and was told to stop taking the Vistaril immediately and take Benadryl to counteract the effects of the Vistaril.  The next day I began having trouble breathing and and it felt like I was having a heart attack along with a terrible burning sensation in my chest and my left arm was completely numb. I called the neurologist again and was told to go the ER right away because I was having an allergic reaction to the Vistaril. I immediately picked up the phone and called my husband and said "I have to go to the ER now!"  As soon as I got to the ER I was put on a heart monitor and given pain medication for the pain.  I was also given a GI cocktail for the burning sensation in my chest.  Then  I was sent for yet another CT-Scan and again it showed nothing unusual.  I was then admitted to the hospital. In the morning my doctor came to see me and by this time the swelling in my face had begun to subside. In addition to the allergic reaction to Vistaril, I also had a severe case of acid reflux and Costrochondritis. I was sent home to recuperate.  After a few days I called the doctor because my chest felt like someone was sitting on it and the pounding in my chest still had not subsided.  I was told the only thing he could do was prescribe a muscle relaxer and that I would need to rest until the muscles in my chest healed.  I was in so much pain and it hurt to even move. I began researching on the Internet and found many people with Costrochondritis take a few months to heal.  This was not the news I wanted.  I did exactly what the doctor said and by the middle of October I was starting to feel much better.

Things were starting to look up until I woke up on the morning of November 17, 2011.  I awoke to both of my arms and hands numb. I thought I had slept wrong and that the numbness would subside. The numbness subsided but only in my left arm and hand.  So when Monday rolled around I called the doctor.  Multiple blood tests were run and I was given a steroid shot.  I was told it was probably a pinched nerve in my neck and that I needed to come back the next week if I wasn't better.  Of course the next rolled around and my arm and hand were still numb and tingling so I went back to the doctor.  All of my blood tests had come back showing normal except for the Iron test which showed I was anemic so I was put on a prescription iron pill and 5 days of steroids. Then I was sent for an MRI of my neck.  I think I wanted to cry because for years I had been asking for an MRI instead of a CT-Scan and they would not send me because everything showed normal.  After the MRI I tried to stay positive while waiting for the results, but the waiting just made things worse.  Finally the doctor called and I was told they had found a lesion on C2 vertebrae and that I would need to see a neurosurgeon. Finally, I had proof something was wrong and I was not crazy! There was something wrong with me!  However, when I saw the neurosurgeon I was informed the lesion could not be removed because it was inside my spinal cord and that I would need to have another MRI including the brain this time. The possible diagnosis could be MS or Lupus. Then I would need to see a neurologist who specializes in this sorta thing.  Well this is easier said than done because most of the neurologists here do not take Tricare anymore.  Having free health care with the military is a blessing but sometimes there is a price to be paid!  By the next week I still wasn't better and no appointment.  In fact I was digressing because now my right foot and leg were numb and tingly.  On December 19, 2011 I went to my doctor again to report the new symptoms.  That afternoon I had an appointment to my regular neurologist, for the migraines, and my doctor told me to talk to him and see if he could push things through.  When I got to the appointment my neurologist examined me and told me the best thing to do was to just admit me to the hospital and run a battery of tests.  The neurologists themselves may not accept Tricare, but the hospital does and they all work rotations in the hospital.  Problem solved.

So on the morning of December 20, 2011 I was admitted to the hospital and the testing began.  I thought they were going to drain me of all the blood in my body. It seemed like every 30 minutes they came back in to draw more blood.  Then the next day I was sent for a 3 hour MRI of the brain, neck, and spinal cord.  When I returned from the MRI a doctor was waiting to perform an LP (Spinal Tap).  I totally freaked out on the spinal tap and my husband was not there with me because he had went to pick up our girls.  I am deathly afraid of needles and I have to watch anytime I am stuck with a needle.  With an LP I couldn't see the needle going in and I started freaking out.  The doctor had to give me something to calm me down.  Needless to say I made through the procedure in one piece but I don't wish to EVER have another LP AGAIN!  A few hours later I started having severe leg  and back pain.  The doctor gave me  pain medication and said I should feel better by the next day.  Boy was he wrong! He told me most patients to don experience pain like that, but that he had seen it a few times before.  The pain still hung around.  Later that day the team of neurologists came in and said they had the results from the MRI. They had found 4 more lesions on my brain in addition to the lesion on my C2 vertebrae. So on December 22, 2011 I was officially diagnosed with MS.   When I heard those words I felt a little relief because I now had an official diagnosis, but at the same time I was stunned or more like frozen with fear.  The doctor kept asking me if I had any questions and I really couldn't speak, so my husband did it for me.  My associate pastor was in the room when they told us and as soon as the doctors left we began to pray.

I now had MS and I was trying to process this information because this was a disease that has no cure.  I am going to have this disease for the rest of my life!  I was trying to stay positive and at the same time I was breaking down inside.  I was told I would not be spending Christmas at home but hopefully I would be home for new years.  I was not happy about this because I wanted to wake up Christmas morning with my girls and open presents like we always do.  I  prayed and prayer chains were going up everywhere.  I was determined to be home for Christmas.  I had to be given so many rounds of steroids to treat this episode of MS.  I started the treatment on Dec 21 before there was an official diagnosis and on Dec 23rd the neurologists examined me and said I was doing remarkable and that if I still doing better in the morning that I could go home....on Christmas Eve!!!!!!  The morning rolled around and I was anxiously awaiting the visit from the doctors.  I had normal strength in my arm, leg, and foot and 70% strength in my hand. They said I could go home and I was ecstatic!  As soon as the discharge papers came around I WALKED out of the hospital...SLOWLY but I walked!  I spent Christmas Day with my family at home and it was great! God DOES answer prayers!

I have now started my medication for the MS called Betaseron.  I am doing much better, but I am still trying to cope with the diagnosis.  Some days are good and some days are not so good, but I try to keep myself positive and keep moving forward.  This is going to be a long road, but I have God on my side and with him I can do ANYTHING!

4 comments:

  1. I dont know if this was meant for people like me to read but I did! I am so glad they finally figured out what was going on with me!

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    1. It's for anyone to read! Maybe I can help someone else.

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  2. the diagnosis takes a very frustrating long time doesn't it...I enjoyed reading your story and find that both of us have a positive outlook on life and know God is with us daily...I joined so I can follow your blog...I hope you will stop by my blog and give a read...I know from experience that as time goes by you will adapt to your challenges and be the best you can be...God bless you. Sandra

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  3. I am following your blog as well Sandra!

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