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Undiagnosed Again: Back Where I Started But Further Ahead

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I went through hell getting my diagnosis — weeks upon end in hospital beds, endless tests, followed by repeats, arguments with doctors, not to mention friendship breakdowns. When I finally got my official diagnosis, eight months on from when it all kicked off, it was bittersweet. PNES. Psychogenic non-epileptic seizures. Seizures caused by emotional turmoil. The amount of stigma attached to that diagnosis is beyond belief. It took me over a year to accept the truth and start believing it was true.

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A couple of years on and now suddenly they’re back-tracking.

“You’ve been through over a year of therapy.”

“You’re emotionally stable.”

“Maybe its not PNES anymore.”

It was stunning to hear. I just sat there in disbelief. It stirred up old emotions.

I was angry. Angry with them for possibly misdiagnosing me all this time, angry with myself for accepting it, angry with all the medical staff who were off with me in the past because I didn’t have epilepsy, so I was obviously faking.

I was happy. Happy because there may be a way to help me.

I was scared, so very scared. I’m back in the unknown. Undiagnosed, searching for an answer. I don’t know what’s going to happen next, where I’m going, who’s going to try and help.

I suddenly feel so lost, a feeling I haven’t felt since my diagnosis.

Life just became a whole lot more complicated. How do I explain my condition? Do I need to change all of my medical IDs? What do people need to do when I have a seizure? Question after question, all without answers.

So I Google, I read, I talk, I investigate, I find answers.

Now it all makes sense. Did I only get that diagnosis because I had a mental health history? I was told that the abnormal activity on my EEG (outside a seizure, I never had one while hooked up) didn’t indicate epilepsy. But some people with epilepsy don’t have anything odd on their EEG. My doctor agrees that I might have epilepsy, so now I’m being referred to a nationwide referral neuropsychiatry center and epilepsy clinic. Because apparently my local neurology team said I was too complex.

And now I wait.

I wait for referrals, I wait for accepts or declines, I wait for appointments, I wait for tests.

I wait for a diagnosis.

I’m back where I’m started, but further ahead.

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Thinkstock image by max-kegfire

Originally published: March 31, 2017
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