Atypical Multiple Sclerosis

In June 2005 after a hospitalization for episodes, from which I never fully recovered, of slurred speech, incoordination, vertigo, trouble walking, loss of sensation, etc. See previous posts.  I followed up with the attending neurologist I saw in the hospital. After my MRI showed a small white spot and Dr. Headupmyarse (a complement really) decided that the MRI was normal, really.  He scheduled me for a TEE (tran-esophageal echo) to rule out TIAs (Transient Ischemic Attacks or mini-strokes).  He also scheduled me for a vascular ultrasound to look for stenosis in the carotid artery, assuring me that both tests would be normal.  See, even after an EEG showed no seizure activity whatsoever-I mean nil, none, zero, NO ACTIVITY-Dr. Headupmyarse felt I was experiencing seizures.

Within a few days I arrived at the cardiac suite of my local hospital for my tests. Luckily, I was scheduled for back to back tests.  First was the vascular ultrasound. This is exactly what it sounds like.  They gooped up my neck and with their magic ultrasound wand began imaging my carotid arteries on either side of my neck. This was easy as pie.  About thirty minutes or so later I was back in the waiting room.  I had twenty or so minutes to fill while waiting for the TEE.

The waiting room housed about twenty chairs of which eighteen were filled.  I sat next to an elderly gentleman.  No sooner did my butt hit the seat and he began telling me all about his wife. She was in the exam room right then and he was worried. This guy looked about 80 years old. I was pretty worried about my test; I did not want to have TIAs. Listening to this gentleman speak so lovingly about his wife, seeing the worry on his face and in his eyes really kept my mind off me. He obviously needed to speak to someone and I was glad to be that person.

The time flew by and my name was called by the nurse. Wishing the man and his wife well, I took a deep breath and followed the nurse into the exam room.  The room was furnished with a hospital bed, a wall of cabients, and a machine upon which sat a monitor.  I changed as the nurse explained the procedure. In my hand the nurse put in an IV into which she would administer a sedative, the doc would spray my throat with an anesthetic to numb it.  Finally, the doc positions a flexible tube with a transducer on the end into my esophagus.  The transducer is positioned in the esophagus just behind the heart.  The TEE looks for any defect in the heart or strokes as a result of blood clots.  

Guess what!? Both tests were normal.  Yeehaw!  Dr. Headupmyarse decided it was seizures, so I got Depakote. Now we, me and hubby, felt somewhat uncomforable with the diagnosis. Now you’re thinking if the ultrasound and TEE were normal ruling out stenosis and TIAs then why didn’t a normal EEG rule out seizures.  We had the same question.  Dr. Headupmyarse had an answer.  Sometimes seizure activity does not show up on an EEG, espcially a sleep deprived EEG in which the patient does not fall asleep.  That’s me.

We were told by the EEG tech that sometimes docs like to do another EEG or possible a three, five, or seven day EEG to be sure about seizures. But not Dr. Headupmyarse.  Oh no, he was so sure that additional EEGs were unnecessary and would delay treatment.  There was the rub.  We could insist (and my hubby did try to insist) on additional EEGs, but did we really want to delay treatment.  He told us that if the brain continues to have seizures for too long then seizures would become permanent.  That was the key.  He said you needed to be medicated now or face permanent seizures. Pretty scary stuff.  Now we know pretty incorrect stuff as well.  Dr. Headupmyarse just wanted me medicated, nice quick and easy. Collect his pay without much work.  Once you’re on Depakote you can’t just stop it.  Nice.  So now Dr. Headupmyarse would get quick easy RECURRING payments. Sweet racket he ran. At that point I just wanted it to be something correctable, fixable, a return to normal even though deep down I knew and hubby knew that wasn’t the case.

I was going to be different for him.  I was never a by the book person.  In fact, most of the time I abhor “by the book”.