Seizures v. Complicated Migraines

July 15, 2008

In June 2005, I was under the care of Dr. Headupmyarse. After my MRI showed only one white spot, my TEE was normal the doc decided I was having seizures even though my EEG was normal.  Depakote was the drug of choice. To say I do not like Depakote is a huge understatement.  Depakote turned me in to a zombie. A zombie that still had all the symptoms I started with: incoordination, vertigo, trouble walking, loss of sensation, severe tiredness, etc.  The incoordination, loss of sensation and trouble walking affected mostly my right side with some left side involvement.

After several months on Depakote without any change, Dr. Headupmyarse decided to do another MRI. This time he felt that I did sound like a case of primary progressive multiple sclerosis.  So this time I had a brain and c-spine MRI.  By now you can guess the results-except for a small white spot, normal.  

Dr. Headupmyarse decided instead of seizures as Depakote should keep them under control, I must have complicated or ocular or basilar migraines. Weening off Depakote and onto Topamax (liked even less than Depakote) took about six more weeks.  By this time it is October and we are getting upset with this neurologist.  He seemed close his eyes, open the big book of neurology, and stab at a disease with his index finger.  Some type of migraine du jour.  

I went from feeling like a zombie to a deep dark place on Topamax. And no, I was not any better off. My symptoms kept progressing and we were now worried.  Dr. Headupmyarse certainly lived up to this name.

All the while, my pcp kept thinking I had multiple sclerosis. Finally, during the first week of December I suffered pain and extreme stiff in my right leg.  My pcp reexamined me, and again thought it looked like MS. So, I asked if he could recommend  another neurlogist.  He did and I had an appointment in mid-January.  

I went to a well respected clinic in an adjoining state.  It took about an hour drive, but at this point hubby and I would drive a day if needed.  Armed with my pcp’s notes, Dr. Headupmyarse’s notes, and MRIs I met Dr. Corporation.  She spent about an hour and a half with us. She took my entire story asked many questions then reviewed my notes and MRIs.  

Her recommendation was do a seven day EEG to rule out seizures, migraines, etc.  Also have brain, c-spine, t-spine and lumbar MRIs.  Add to that about 50 different blood tests. “In cases like this, it sometimes takes months before we can nail down a diagnosis, but we’ll get there.”  Those were her exact words. HOPE.  She gave us hope.  So, why do I call her Dr. Corporation.  Keep reading, you’ll see.

For the next six weeks I went through tests and waited for early March 2006.  I knew Dr. Corporation would help me, help us.  She seemed so kind.  By this time, my right leg was stiff like a cement pillar, my left leg was only slightly better.  I kept dragging my toes as I made my way. My legs felt as heavy as cement pillars as well.  I would say “as I walked” but by this time on one could really call it walking. Severe vertigo made it impossible for me to drive. Sometimes all I could do was sit on my couch.  My hands were losing sensation like my legs and incoordination had spread to the hands as well.  I still felt very, very tired.

On the drive to my follow-up appointment with Dr. Corporation hubby and I spoke about the real possibility that I had multiple sclerosis like my two sisters.  One sister was already diagnosed with MS when I started with my issues. She was on Copaxone and doing pretty well.  My other sister went to her pcp and told him about some cognitive issues she was having along with her history over the past seven years of repeatedly being down with “unknown viruses” for a couple of months a time before recovering. After blood work and brain MRI, she was diagnosed with relapsing remitting multiple sclerosis like my other sister.  

Hubby reminded my that although my pcp thinks MS, I was very different than my sisters. They had distinct relapses then recovery.  I continually slid downwards with worsening of symptoms a few new ones. I knew Dr. Corporation would help; she seemed like she cared, wanted to help, knew how to help.

In Dr. Corporation’s empty waiting room we sat for almost an hour before being quickly (quick was not easy for me) ushered into an exam room.  Dr. Corporation opened the door and without even closing the door she told me my tests were all negative. There was nothing else she could do. THAT WAS IT! FIVE SECONDS AT BEST!  Then she turned to leave.

“Wait!” hubby pleaded. She slowly returned to the room. I wanted to know if I could get off Topamax if my EEG was normal. I could.  There must be something wrong with me, look at me. You said you could help, may take awhile.  “I was wrong.” That was her response.

I have since found out that this “well respected clinic” had a great track record treating MS patients because they accept or treat only those patients that can be successfully treated.  She was just following Corporate Policy hence Dr. Corporation.  

Hopeless.  That is all I felt.  Hopeless.

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One Response to “Seizures v. Complicated Migraines”

  1. Agnes B.Gubas Says:

    Are you any better? My Neuro put me on Topamax for dizziness and vertigo, it made it worse.


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