4 Different Doctors, 4 Different Diagnoses. 0 Answers.

So, my history with seizures is a long (and confusing) one. I had my first grand mal seizure when I was 2, and they happened many other times until I was 14. Then just...stopped. Fast-forward to 21, when a new series of shaking episodes started. They happened once a year, gradually increasing over a decade to happening multiple times per day. I don't lose consciousness. I'm 100% aware of my surroundings. I can talk and move and function just fine. These shaking episodes can happen at any time, day or night, sick or healthy, stressed or not stressed. There isn't really a way to predict when they will happen, apart from feeling...jittery and/or nervous beforehand. (Maybe compared to having the jitters before giving a speech, or flying for the first time, or something of the sort.) The shortest episodes last about 10 minutes. The longest episode was 8 hours, non-stop. What they look like isn't easy to describe, but there are some YouTube videos that are similar (the people in them are either experiencing pre-seizure shaking episodes and/or focal motor seizures). Now, in the last 5 years, I've seen 4 different neurologists about these shaking episodes. (Why 4? It's a long story, but to sum up: the first neurologist switched to a different hospital, no one told me and I was surprised with the introduction of the second neurologist. That one--the second neurologist--I met once and she told me to go elsewhere for help. The third neurologist said that their hospital didn't specialize in the care I needed, and recommended a different hospital. So, now I'm with the fourth.) In the span of time that I've seen those 4 doctors, the following things have happened: -Switched from phenobarbital to lamictal -Clonazepam was added to the medication list -Ropinirole was briefly tried (and was the worst experience of this whole mess). -Several regular EEGs were done. -2 Long-term (video monitored) EEGs were done -1 MRI -1 EMG -1 Sleep Study -6 months of therapy And I'm currently doing neurofeedback therapy. That (the neurofeedback) plus the medication (lamictal and clonazepam) has been the biggest help, in that they've reduced the frequency of my shaking episodes significantly (from multiple times per day, to a couple times per week). The thing with all of the tests is they all came back with normal results (including the long-term EEGs, during which I did have some of these shaking episodes). The thing that really frustrates me is, despite all of these tests, therapies, and medications, I still don't know what I have, what my condition or disorder (or whatever you want to call it) is. Those 4 doctors I mentioned each had a different diagnosis: 1. "Localization-related (focal) (partial) epilepsy and epileptic syndromes, with complex partial seizures, without mention of intractable epilepsy" and "Spells" 2. "You don't have epilepsy. You have some kind of movement disorder and we don't specialize in that here. You'll have to get a second opinion elsewhere." (Not really a diagnosis, but that's what she told me.) 3. "Periodic Limb Movement Disorder" 4. "Conversion Disorder" (this is the most recent one) (It should also be noted that the neuropsychologist--the neurofeedback therapist--insists that it is a type of seizure, but doesn't specify what type.) What do you do when all of your tests come back with normal results, and every doctor you've seen tells you that you have something different (or to see someone else because they can't help you)?