Saturday, July 23, 2011

Being Diagnosed with CIDP

January 10, 2008 is the day my life changed forever.  Sometimes it all seems like a dream, a nightmare actually.  I wake up some mornings thinking it's time to get up and get ready for work.  It's been 3 1/2 years, and I often wonder if I will ever get used to this new "normal" in my life.

About 4 or 5 years prior, I went to see a neurologist because I believed I had Carpal Tunnel Syndrome.  The pain in my left arm had gotten to the point I couldn't tolerate it anymore.  After doing an EMG and a brief physical exam, he looked at me and asked me if anyone had ever told me I had neuropathyI had never been told that.  If he had not done the EMG, I don't know I would have trusted his diagnosis.  I wasn't very impressed with him and never intended to go back.  As time went on, my gait began to change and my feet began to shuffle across the floor as I walked.  I had been told by co-workers they knew when I was coming up the hall because they recognized my footsteps.  I also would fall occasionally.  I would just be standing or walking and my left leg would just give out.

In 2006, I was hit in the rear-end one morning on my way to work.  At the time I was hit, I didn't notice anything being wrong, but as the morning wore on, my left leg began to hurt all the way down to my toes.  I saw my family doctor later that morning.   He believed my sciatic nerve was inflamed but wanted me to see a neurologist to make sure nothing else was wrong.  I ended up going back to see the same neurologist.  He accused me of wanting to get a big fat insurance check.  I vowed then, I'd never go back to see him!  My sciatic nerve, to this day, has never healed.  I started to fall more frequently, my gait started getting worse and the pain was almost constant.  For the next year, my doctor tried to convince to go see another neurologist.  I finally agreed.

Dr. Richards, my family doctor sent me to see Dr. Gaw.  He confirmed I had neuropathy, but he couldn't figure out why.  He was in process of continuing to run tests, trying to determine the cause of the neuropathy and why I was falling so often, when I collapsed in my office on January 10,  2008.

I hadn't felt well that morning, but I couldn't put my finger on what was wrong.  I had just had a conversation with a friend about lunch.  I was going to finish up what I was doing while she ran to the restroom and I'd be ready to go.  I got up from my desk to go file some papers on a few charts, and thing I remember next is people screaming my name and hearing sirens in the background.  I knew they were coming for me.  I was taken to the hospital.  They ran a few test but could find nothing wrong with me.  I was weak, but other than that, everything was fine.  They sent me home and over the next few days I became weaker and weaker.  Dr. Richards called every day to check on me and on the fourth day I told him I could hardly walk anymore.  He said he was going to call and talk to Dr. Gaw and would call me back.  In just a few minutes, my husband called and said he was on his way to pick my up.  Dr. Richards called him and said Dr. Gaw wanted to see me just as soon as he could get me there.

After a brief examination, Dr. Gaw left the room to go call Dr. Richards back.  When he returned he said he was sending me to the hospital for direct admit.  He was admitting me through the ER because he could get tests done quicker than he could if I were already in a room.  I told him I'd have to go home and get a few things.  He informed me I didn't have time.  I needed to immediately leave his office and head to the hospital.  I still had no idea at this point what they were thinking.  Dr. Richards had told my husband when he called him, but they didn't tell me.  I think they were just trying to keep me calm.  Once I got to the hospital they immediately took me back and within moments a nurse was hooking me up to an IV and a doctor was in the room.  I remember thinking, this must be serious, but it wasn't until Dr. Richards walked in the room and sat down that I was certain it was serious.  They were waiting for radiology to come and get me for an MRI.  I'm extremely claustrophobic, so they had to pump me full of ativan.  All of this was happening as he came into the room, so as soon as I realized it was definitely serious, the ativan started taking affect and I really didn't care.  I did, however, care when they slid me into the MRI machine.  After 12 mg of ativan, I was still screaming for them to get me out of there.  The only thing I remember about that is thinking I was climbing out of pink cake.

By the time I was taken up to a room, it was late evening.  My room was crowded with family and friends and they were spilling out into the hallway.  I still had no idea what they believed to be wrong.  Within minutes, Dr. Gaw entered the room and gave me the news.  He was certain I had Gillian Barre'He said he hoped it had been caught quickly enough that once they started the treatments it would stop progressing, but there was good chance I could be on a ventilator by morning.  He then said there was also a possibility I might not even make it through the night.  I was in shock.  I knew what Gillian Barre' was because it had struck the ladies basketball coach at the University in my town a couple of years prior, but I couldn't wrap my head around the possibility it was happening to me.  I don't know what everyone else had been told at that point, but knew everyone had a worried look on their face.  I remember telling them, they think they've caught it early enough and everything is going to be okay.  Somehow I thought it was my job to comfort them, but on the inside I was terrified.

After everyone left and my husband fell asleep in the chair next to me, I began to pray.  Lord Jesus, please don't let me die.  I fell asleep crying and when I woke up the next morning I couldn't move my legs at all.  But I was alive and I wasn't on a ventilator!  First thing, they took me down for a spinal tap and shortly after that they began the IVIG treatment.  By the grace of God, because Dr. Gaw had already ran every test, with the exception of the spinal tap, treatment was able to begin days sooner than it would have otherwise.  It could have been much worse if more time had lapsed before treatment was able to begin.  Thank you, Lord, for your mercy!

Sunday morning I woke up with a massive headache.  It was the worst headache I had ever had in my life!  My friend, Connie, came to stay with me that morning so Nathan could run home and shower.  Shortly after she got there, the nurses sat me up in a chair.  I really thought for a moment I was having a stroke my head was hurting so bad, and then I started throwing up.  The IVIG had caused me to get chemical meningitis.  It was horrible!  I couldn't even stand to hear someone breathe.  After the IVIG treatment was complete and the chemical meningitis calmed down, the social worker came in one morning and told me I was being transferred to inpatient rehab.  I lost it!  We ended making the decision Nathan would take family leave and I would return home.

The next week I began outpatient rehab.  I was slowly making progress.  Then in April, I was sitting in Sunday school and suddenly couldn't raise my arms.  Back in the hospital I went to start another round of IVIG.  Another round of IVIG and another bout of chemical meningitis.  Because it hit again, and Gillian Barre' typically only happens once, Dr. Gaw was sure I had CIDP.  CIDP is an acronym for Chronic Inflammatory Demylinating Polyneuropathy.  It can best be explained here and here.  He sent me to Vanderbilt to see a neurologist who specializes in neuropathic diseases.  She confirmed it was CIDP.    

I will post later what happened from there.

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