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.
Hospitalization
July 11, 2008
So, there I was in the hospital. I landed there after several episodes of severe vertigo, slurred speech, incoordination, trouble walking (like my legs no longer communicated with my brain), extreme fatigue. Hubby brought me into the ER of my local hospital.
When the triage nurse brought me in to get the particulars of my case it was clear something was wrong. I could understand the nurse’s questions but took awhile to find the words, then slurred as I answered. Immediately, I was given a room in the ER. Docs came in, ordered heart monitor, oxygen sensor on my finger. You know the routine. Once the docs found out there was a family history of heart problems (I was 37 years old at the time-only a few years younger than my dad’s first heart attack), a nitro pill was stuck under my tongue.
What a picture: me laying in a hospital bed with wires from my chest and fingers connected to beeping machines on the wall, blood pressure cuff automatically taking readings every few minutes, hubby and son (one on each side of the bed) holding my hands. I think they were holding my hand out of worry themselves more than me. I knew something was seriously wrong before this point, I knew the moment I “shut down” (see previous post:Back to the beginning). This was just the beginning of the rest of my life, just not in the way you normally think of it.
After my heart proved strong and healthy (knew it wasn’t my heart-it felt deeper than that-a permanent change). Docs decided to keep me overnight for observation. Something didn’t add up to them. Not a stroke as I seemed to recover almost completely.
The next morning the attending pcp went over the plan. I was to have an MRI and/or CT scan, follow up with the attending neurologist and then discharged. I’ll call the neurologist Dr. Headupmyarse. I didn’t think of him like this at first but by the end of six months Headupmyarse is the nicest name I can think of.
Without even seeing or talking to me, Dr. Headupmyarse ordered only an MRI without constrast. I had only a brain MRI. I say only because I continue to have brain, c-spine, t-spine, and lumbar MRIs. Anyway, this was my first foray into MRIs. I hate tight spaces to begin with. Yes, I did squeeze the panic bulb. Several times. But I got through it and so did the techs.
Several hours late Dr. Headupmyarse came in to exam me. He slowly took down my story, painfully slow, but hey that’s a good thing, right. Then he examined me. Follow the finger upon which I noticed and informed him that I was experiencing double vision. Then came the pin test. Basically, the doc bends an ordinary safety pin and pokes you like you’re a human pin cushion. My right side in general felt the poke but it felt dull, not sharp. My right leg from the knee down felt nothing. I mean NOTHING! I watched the pin go in, felt nothing, saw look on hubby and son. Wow! That’s weird and not in a good way. Dr. Headupmyarse didn’t really seem to show anything. The test continued. He took the end of his metal handled reflex hammer and ran it up the soles of my feet. NOTHING! No response, felt nothing.
My son, whose favorite past time was trying to tickle my feet without getting kicked in the process. Kicking was an involuntary response when my feet were tickled. My son pushed past Dr. Headupmyarse and tried unsuccessfully to tickle me. He looked from me to his dad as my hubby explained to the doc how ticklish my feet used to be. Again no response from Dr. Headupmyarse. Finally, he went to exam my MRI.
Good news! My MRI was clear except for one small white spot which was nothing to worry about. So what was wrong? Well, Dr. Headupmyarse decided and the way he explained it seem to make sense to us that it was probably seizures or TIAs. TIAs are small strokes that leave no permanent damage, but can lead to a massive stroke. His treatment plan called for me to go home and on Monday (it was currently Sunday) his office would call with an appointment for a TEE (trans-esophageal echocardiogram) which would rule out TIAs. No EEG because several days before this hospitalization I had an EEG which, you guessed it, was normal- No signs of any seizure activity.
I went home. My hubby, my son, and I drove home in silence. We figured it had to be TIAs becasue the EEG was normal. And yes, I did go home and research TIAs and TEE on the internet. Bad move, but I needed to because that was all I could do until the next day. TIAs certainly were a permanent change, but after reading about them I didn’t really think I fit the description completely. Although later I met a doc who told me sometimes diseases don’t read the textbooks and act differently or Atypically-sound familiar.
Atypical Multiple Sclerosis 