Demyelinated not Destroyed

My journey with CIDP began five years ago when I went to see my family doctor about tingling in the palm of my left hand. The tingling encompassed the entire underside of my palm. At the time, it was suspected I had carpal tunnel syndrome in spite of the fact that carpal tunnel syndrome is typically isolated to the index, middle, and ring fingers, in addition to the palm of the hand.

Ever since middle school, I have spent a lot of time on the computer, writing. It made perfect sense to my doctor and I that I could have carpal tunnel syndrome. Just to be certain, my family doctor referred me to a neurologist to get a nerve conduction study done. Nerve conduction studies are routinely done in order to diagnose carpal tunnel syndrome.

I went to the appointment, expecting to be poked and prodded a bit. I thought I would be told I had carpal tunnel syndrome and that I needed to cut back on the amount of time spent on my computer. The being poked and prodded definitely happened but no diagnosis came that day.

When I arrived, the neurologist took my complete medical history, which included a reflex and balance test. Then, the nerve conduction study began. He made lots of measurements and drew lots of marks on my left hand and arm. He would take a few measurements, then place the leads on my arm that were needed to give me the little, electrical shocks that comprised the nerve conduction study. After one series of measurements was completed, he’d move on to the next and the process would start all over again.

The tiny electrical shocks of the nerve conduction study in no way prepared me for the one I was to receive after the test was over.  As I sat on the exam table, admiring the black Sharpie Xs on my left hand and arm, the neurologist told me that I definitely didn’t have carpal tunnel syndrome.  He looked at me and said, “I think you might have Multiple Sclerosis.”

I was floored.  I remember my neurologist going over my medical history and the results of the various tests he had performed on me that day.  I had a history of migraines, was 24 years old, had recently had a child, and had hyper-reflexes.  That combined with the tingling in my left hand that clearly wasn’t being caused by carpal tunnel syndrome made my neurologist suspect I was in the very beginning stages of Multiple Sclerosis.

Unfortunately, due to the accepted protocols for diagnosing Multiple Sclerosis, there was little that could be done for me at that moment in time.  An MRI and lumbar puncture would have been useless.  If it was a first relapse, as was suspected, the lesions wouldn’t show.  My neurologist advised a “wait and see” approach.  When I left his office that day, he told me to call him if I had any further problems or if the tingling got worse.

I called my husband as I drove home from my neurology appointment to give him the news.  I was still very much in a state of shock.  Once I got home and reality started to set in, I did the only thing I could do; I got online and began to research as much as I could about Multiple Sclerosis.  It wasn’t much but it empowered me.  I was doing something productive in educating myself about what my future might hold.  After a month, the tingling faded.  Life went on with only an occasional nagging thought at the back of my mind about the possibility of having Multiple Sclerosis.

That summer, I abruptly developed an allergy to aspirin, Motrin, and Alleve.  I went from being able to take it just fine to being deathly allergic to it within a matter of a month or so.  Aside from finding it annoying, I didn’t think much about it at the time.  I had other allergies, mainly to pollen and pet dander.  I thought it was just another random allergy of mine.  It wasn’t until I developed an allergy to Tylenol the summer after my son was born that I began to think the sudden allergies might be related to a problem with my autoimmune system.  Now, five years later, the list of medications I’m developing allergies to continues to grow.  I’m averaging roughly one new medication allergy a year.

Shortly after my son was born, the tingling in my left hand returned.  It brought with it muscle spasms.  Once again, I found myself at the neurologist.  This time an MRI was scheduled to detect any possible Multiple Sclerosis lesions.  As can be expected, the MRI didn’t show any lesions.  A VEP that was done showed a slightly abnormal result in my right eye but I was told it wasn’t anything to be concerned about.  As a result, once again, the waiting game began.

I stayed in this relapsing/remitting cycle for three years.  Each time, the tingling and muscle spasms would get a little worse and last a little longer.  Each time, they would eventually completely go away.  It wasn’t until I moved to Texas that my symptoms began to take a downhill slide.

I know the sheer heat and humidity of Texas is responsible for the increase in my symptoms.  I’ve always been a tad heat sensitive, which is another reason it was suspected for so long that I had Multiple Sclerosis.  Like clockwork, every change in the seasons brought on a relapse.  Each time, new symptoms were added to the mix.

I went from experiencing only tingling in my hand and occasional muscle spasms to widespread tingling, muscle spasms, muscle cramps, fatigue, weakness, and tremors, primarily in my hands.  I’ve lost some of my sense of balance and nearly all reflexes in my feet.  I trip over things.  I have problems thinking, particularly where spelling and grammar are concerned.  Being a writer, having problems with spelling and grammar are particularly troublesome for me.

I began to notice that my symptoms stopped going completely away.  I wasn’t recovering like I had before.  Instead of a clear relapsing/remitting pattern, I was in more of a get-worse-then-plateau-a-bit pattern.  Needless to say, I sought a referral to a local neurologist from my family doctor.  All the while, I was still acting under the thought that I might have Multiple Sclerosis.  All of my symptoms seemed to fit that disease the best.

The first neurologist I saw was, quite frankly, a jerk.  He didn’t listen to a thing I said.  He focused solely on the tingling in my hand, even though I told him my tingling was more widespread than that.  He went so far as to say the tingling in my hand was caused by hyperventilation.  I’ve never hyperventilated in my life!  He outright ignored all of the other problems I’d been having.  When I left his office an hour later, I think I was at one of the lowest points I had ever been in.  I was so frustrated and angry.  He told me to see him again if I had any problems in the future.  That definitely wasn’t going to happen!

Thankfully, the next referral I received from my family doctor was to the neurologist I’m presently seeing.  When I first saw him, he thought it was possible that I could have Multiple Sclerosis but didn’t want to rule anything out.  A lot of tests were run.  After plenty of normal MRIs and blood work, an EMG revealed that I had widespread muscle damage in pretty much every muscle in my body.  As odd as that may sound, I was relieved to have an abnormal test result.  It was concrete proof that all the symptoms I’d been experiencing wasn’t just in my head.   Still, with no positive Multiple Sclerosis lesions on an MRI, my neurologist was hesitant to make any sort of official diagnosis.

Ultimately, it was my decision to begin taking a steroid pack my neurologist had prescribed to me “just in case my symptoms got worse between my six week appointments” that helped me receive a diagnosis.  The steroid pack gave me horrible insomnia but it also improved my symptoms dramatically, something I desperately needed.  I was having far more bad days than good.  I was losing my endurance and getting steadily weaker.  At my next appointment I informed my neurologist of the changes and what brought them about.  It was that improvement from the steroids, coupled with my various test results that caused my neurologist to diagnose me with Chronic Inflammatory Demyelinating Polyneuropathy instead of Multiple Sclerosis.

That diagnosis came two months ago.  Since then, I’ve started treatment for CIDP.  I don’t know what the future holds for me but I am determined to make it the best I can.

Trackback URI | Comments RSS