Hi all
I've been on the neurology forum for a while now but after my visit to the neuro yesterday I thought that maybe I should drop by here because he now says that he thinks there's a 60% chance that I have epilepsy.
It all started in March 2009 when I got up to go to the toilet in the middle of the night and as I was climbing back into bed I started getting these continuous jerks in my abdominal area. They were so strong that it looked like I was actually bending forward so my parents took me to casualty. I also was hyperventilating and had heart palpitations and a dry mouth. The doc there said that it was just a panic attack (he didn't even come do a check up on me or run any tests) and that I just needed to stop stressing so much (I had written 4 tests in the past 2 weeks.) We would have agreed with him if it wasn't the fact everything still carried on after I was sedated so we headed off to our GP later in the day. By the time we reached him the jerks weren't continuous but there was still alot of them. The GP at least ran some blood tests and when everything came back normal he also declared that it was a panic attack.
The jerks still weren't stopping even though they weren't continuous, there was about 40 every minute, and I also developed a hand tremor so we decided that I should see a neuro. She ran millions of tests which included blood tests (ANA, vitamin levels, kidney/liver function,) MRI scans, EEG, EMG and lumbar puncture and everything came back normal. She even did and EEG when I had another "attack" and that also came back normal. She declared that I had spinal myoclonus and we started treating that.
Clonazepam was my first option but that made the jerks feel 10 times worse (we think that may actually have triggered the second attack because I took it one night and the attack happened the morning after) Then I was on sodium valproate which was effective, but it seemed like my body started tolerating it and the dose kept on having to be increased, which eventually became too high for my body to handle and I suffered from suspected valproate toxicity. "Suspected" because the levels in my blood were still within the normal range. That caused a whole confusional episode where I didn't know what day it was, my speech was slurred, I had extreme somnelence, strange behaviour and I don't remember anything from that day. So we lowered the sodium valproate to a third of what it was and we added levetiracetam, which was also effective but like with the sodium valproate on its own, my body seemed to start tolerating it and I eventually reached the maximum recommended dose. That's when my neuro decided to refer me to someone more senior (that was back in March this year.) He now has me on sodium valproate and lamotrigine.
Sorry for the long history, I just thought that a bit of insight would be good before I listed my symptoms. Here is the list of symptoms that I'm currently experiencing:
Spinal myoclonus in abdominal area
Hand tremor that sometimes spreads to my whole arm
Speech difficulties, written and oral
Blurry vision and sometimes see floaters
Fasciculations in my legs
Memory disturbances
Headaches
Short concentration span
Fatigue
"Confusional episodes" (that's what the neuro calls them, I basically can't make sense of what people are saying and I'm unable to speak as well but I know that it's happening)
At first this new neuro said it was just spinal myoclonus as well but when I went to go see him yesterday, which has now been the third time, he suddenly said that there's a 60% chance that I have epilepsy and he gave me these "options"
1. I have simple partial seizures and myoclonus and all the other things are just side effects of the medication that I'm taking
2. I have one of 2 progressive myoclonic epilepsies, either Lafora disease or Dentatorubropallidoluysian atrophy
I'd just like to know if anyone thinks that his diagnosis of epilepsy is correct and if it is, which type do you think I have
Thanks in advance