So, after nine months of medical testing, and four months of medication induced hell, an exam from an independent source has determined I do not have Epilepsy.
The leading Epilepsy treatment center in the nation is located in my backyard, and thanks to the love and care of some of my friends from law school, and their dear parent who works at said center, I was able to get in to see a specialist well in advance of the normal six month wait most people have to follow to get seen. The doctor who saw me reviewed my records, tested me carefully, did a thorough history, and then announced that I do not have the dreaded Epilepsy.
What I have is a movement disorder, or basically, the worlds longest lasting hand cramp.
I do not have Epilepsy because my “seizures” jump from one side of my body to the other, without making a visit in between. I do not have Epilepsy because they can last for hours, instead of minutes.
This means I do not have to stay on this mind altering, taste altering, attitude altering, weight dropping, joint pain causing, misery enhancing, neuropathy causing, nothing seems to make me happy, anti-seizure medication for the rest of my life.
I am ramping down off of it as we speak.
I am still going to have my normal neurologist track my symptoms, just in case the other doctor got it wrong. However, everything she said made sense, and looked and sounded like sound science to me. My Epilepsy never acted like anything my Epileptic friends had gone through, and the medication had stopped helping a while ago. Oddly, Topomax is prescribed for movement disorders, so the fact that it helped initially makes sense. However, the other side effects I have make using it for me a bad idea.
So, despite being initially really mad that I had spent so long being in pain caused by medication for something I don’t have, I am cautiously optimistic. Hopefully whatever treatments are in store for the movement disorder are much better than the treatments I am currently coming off of. Hopefully I can eventually get this under control and treat it with massage and yoga, otherwise known as lifestyle changes.
Hopefully this will actually be my final diagnosis.