I apologize for the delay in my post. The past few weeks have been quite an emotional roller coaster, and the past year has been one of the most challenging of my life. Obviously, not having epilepsy is great news because it's one less thing for me to worry about, yet some of the happiness I should be feeling has been overshadowed by the anger and sadness I have surrounding the misdiagnosis. I do not understand how the neurologist that diagnosed me with epilepsy could have been so wrong. I only went to see him for migraines! Epilepsy wasn't even a consideration.
I am not exactly sure how to explain what's going on in my head, but I'll try.
I was diagnosed with epilepsy in December 2009 and was immediately put on horrible anticonvulsant medications that only someone who has taken them can understand. I suffered the consequences of the epilepsy diagnosis from December 2009 through November 2010, when it was finally determined that I do not have epilepsy.
Medication side effects ranged from annoying and unpleasant to horrific and life-threatening. Some of the side effects were magnifications of symptoms I already experience from the ME/CFS, while others were new symptoms altogether. Medication side effects included extreme fatigue and weakness, difficulty going up stairs, twitching, trouble thinking and processing information, mood changes, hormone imbalances, mild rashes, swollen hands and feet, exacerbation of RLS, worsening insomnia, tremors, uncontrollable eye movements, nausea, headaches, dizziness, severe memory problems, hair loss, and anaphylaxis.
The last experience (anaphylaxis to Keppra) was the most traumatic. I was home alone when it happened and had to call 911 for myself. I still have flashbacks of the event when I see ambulances, hear sirens, or see the hospital I was taken to. I sometimes wonder what would have happened had I not called for help. Would I have suffered from more serious complications, or might I have died?
Even after I stopped the medication that caused the allergic reaction, my body stayed in a highly allergic state for weeks after the event. Additionally, I strongly reacted to the steroids I was put on – developing Cushing's Syndrome-like symptoms, including swelling of my face, fat pads on my shoulders and back, excess fat around my middle, weight gain, acne, and chronic yeast infections. Though I have not taken any steroids for several months, I still have some of these symptoms.
I went on Short Term Disability twice as a direct result of the epilepsy medications. The first time I took disability for epilepsy I was already on disability for another reason (poor reaction to a lumbar puncture), but the neurologist recommended that I extend it for about a month so that I could adjust to my new medications. The second time was because of my allergic/anaphylactic reaction to Trileptal.
Technically, I was not supposed to drive anymore because of the epilepsy diagnosis. Because I never lost consciousness, I made the decision to continue to drive myself to and from work (which is about 5 miles away). I stopped driving anywhere else, so my husband had to drive me to medical appointments and anywhere else I needed to go.
Towards the end of October, however, I made the decision to stop driving altogether. It was my understanding that I was still having seizures (according to my neurologist), even though I'd never once lost consciousness. I didn't like the idea of breaking the law (people with uncontrolled epilepsy are not supposed to drive in my state) or putting others at risk by driving with epilepsy. I started to ask around at work to find out if anyone lived close enough that they would be willing to drive me to and from work. One of my coworkers said that maybe we could organize some sort of carpool rotation where different people would drive me on different days of the week. If I had not seen the epilepsy specialist who determined that I do not have epilepsy, I would not be driving today.
Epilepsy is a life-long condition that affects every aspect of one's life. The neurologist that diagnosed me told me that I would be on medications for the rest of my life. He said that if I hadn't started medications, my seizures would likely progress to tonic clonic seizures (aka grand mal) and possibly permanent memory loss. I was scared about getting pregnant while taking epilepsy medications because of the terrible effects most of the medications can have on a fetus. I had a medical ID bracelet that would inform emergency medical personnel of my epilepsy diagnosis and allergy to Trileptal. I was terrified that the next pill I took would put me in the hospital again or kill me.
It's been said that if you really want to understand someone, you should walk a mile in their shoes. Well, I've walked about 10,000 miles, and I can tell you that epilepsy is not something to be taken lightly. I wrote a letter to the neurologist that misdiagnosed me to ask him how he could have misdiagnosed me. I am not expecting a response, but I think it is good for him to understand the consequences of diagnosing (or misdiagnosing) someone with epilepsy. (I will post a copy of the letter later. I first have to edit it for privacy reasons.)
This whole experience has made me a stronger advocate for my own health needs. I had doubts about the diagnosis to begin with, but it took a life-threatening emergency and nearly a year's worth of suffering for me to seek a second opinion from a specialist. From now on, if anyone decides to diagnose me with something serious, I will be seeking a second opinion from a specialist -- no matter how obvious the diagnosis seems or how expensive a second opinion ends up being (because it might be less expensive in the long run).
I now feel the need to do some research on the misdiagnosis of epilepsy. I want to know how common misdiagnosis is because I am concerned that my old neurologist might be doing this with other patients. If he read my normal EEG's as being completely abnormal with lots of seizure activity, how can anyone trust him to be reading other patients' EEG's correctly?
Sorry about the long post, but I've had a lot on my mind. Writing about it is cathartic.