Wednesday, October 20, 2010

Mystery Diagnosis

The road that led to my MS Diagnosis was long, scary and very much a mystery!

Jan 007
It started with a tingling sensation in my left hip that can best be described as a bee buzzing around in my hip.  I went to see my primary care physician and he had some X-rays taken of my spine.  The X-ray revealed inflammation in my T10 vertebrae.  This is considered the thoracic portion of your spine which is in the middle region of the spine and the lower region of the rib cage.  My doctor sent me to a neurosurgeon, by mistake.  The neurosurgeon  said that I should've been sent to a neurologist.  It took months to get in to a neurologist and during that time my condition was progressively getting worse.  I had numbness and tingling from my right foot, up my leg to my abdomen and down my left leg.  Not only that but I was struggling with bouts of dizziness to the point where I felt drunk at times. 
March 2007
One night I was so nauseous from the dizziness I started vomiting.  My husband took me to Urgent care.  They didn't really know what to do and there was only so much they could do.  They took my blood pressure while I laid down, sat down and stood up and they checked my urine before sending me home.  They thought maybe I had vertigo from a sinus infection.  I was in ER by the next day because my condition was deteriorating fast.  It was there in the ER that I first heard the words Multiple Sclerosis.  The doctor took MRI's of my brain but it came back  w/o any signs of inflammation so I was not diagnosed with anything at that point.  After about 5 hours I was sent home with only the one thought on my mind, "Could I really have MS?"  The only thing I knew about MS was that Montel Williams had it.  I had no idea how it affects the body.
 My first appointment with a Neurologist was at the end of March.  I was unable to walk very well at all by then and my vision was blurry.  I continued to have the dizzy, drunk feeling daily.  He took one look at me and he could tell by looking at me that something was very wrong.  He apologized that it took so long for me to finally get into his office.  He sent me to the lab where they took about 8 vials of blood to test me for diseases such as lupus, Sjogren's syndrome, Lyme disease, HIV, Gullilan-Barre Syndrome and a whole list of diseases that affect the nervous or immune system.  Everything came back completely fine and normal.  Then he sent me to have a CAT scan of my brain, results were normal.  I also went to see an Optical Neurologist to test my blurry vision for links or signs of something more serious.  Next  he sent me to have a spinal tap, which was very difficult for me since I was too dizzy to move but God helped me find a position where I didn't feel like I was falling long enough for them to retrieve fluid from my spinal cord.  Aha, that was the first key to my illness.  The results showed that there were oligoclonal bands in my spinal cord which is an indicator in diagnosing MS.
April 2007
In order to have a definite diagnosis, there must also be at least 2 lesions in the central nervous system which is basically your brain and spinal cord.  Up to that point, I only had the one incident in my spinal cord.  At that point, he diagnosed me with Transverse Myelitis which means inflammation in the spinal cord or (there's something in your spinal cord but we have no clue what it is).  The only treatment was high dose steroids.  I had to go to the hospital every day for 5 days to receive Solu-Medrol (steroids) by IV.  After 3 weeks  the steroids helped to decrease the inflammation and slowly but surely, my symptoms began to dissipate.
May 2007
After 5 weeks off of work, I was able to return w/restrictions at the end of May 2007.  Most of the numbness went away with the exception of my right foot.  It's not completely numb, but it always feels like I have a band wrapped around my foot near my toes.  My vision in my right eye remained blurry for a long time as well.  I only noticed it when I tried to put make-up on my left eye.  I continued to see my neurologist monthly and things were slowly improving but I never returned to normal. 
December 13, 2007
I had a scheduled visit with my neuro.  I recently had an MRI of my brain, neck and spinal cord as follow up.  I remember being really achy in my shoulders and neck.  When I explained my symptoms to him, I asked him if it could be signs of the flu.  His answer was, "No, it's the disease."  He could tell by the look on my face that I was confused because he had not revealed my MRI results yet.  That's when he showed me my films and revealed that not only did I have more lesions in my spinal cord but they were now present in my neck and brain.  So it was then that I received my diagnosis of MS.  I knew that my chances were 50/50 so I had been doing research about this disease ever since it was first mentioned in the ER.  When I walked out of my doctor's office, I began to cry then 3 seconds later God told me not to be afraid.  He would walk with me and be by my side.
This December will be my 3rd year since I was diagnosed with MS.  I have the relapsing remitting form of MS.

Relapsing/Remitting Multiple Sclerosis (RRMS) is one of four internationally recognized forms of Multiple Sclerosis.
RRMS is characterised by relapses (also known as exacerbation's) during which time new symptoms can appear and old ones resurface or worsen. The relapses are followed by periods of remission, during which time the person fully or partially recovers from the deficits acquired during the relapse.
Relapses can last for days, weeks or months and recovery can be slow and gradual or almost instantaneous. The vast majority of people presenting with Multiple Sclerosis are first diagnosed with relapsing/remitting. This is typically when they are in their twenties or thirties, though diagnoses much earlier or later are known. Twice as many women as men present with this variety.

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