My Diagnosis: Conversion Disorder


Since I have nothing new in the bio parent search, I thought I would take this time to talk about my recent diagnosis. (This will be a long post, so get ready!)

I’ve struggled with my health off and on (mostly on) my whole life. I had seen many different doctors in the past, all each trying to treat one symptom, but not the whole. None of them could ever figure out what was wrong with me. Deep down, I knew all of my symptoms were related, but I didn’t know how.

A few months after my fourth child was born, my symptoms worsened. I suspected something might be wrong with my thyroid. In July, I finally broke down and went to see my family doctor. He decided post-partum depression would explain most of my symptoms but gave me a thyroid test anyway. The next day, the test results came back negative and I was diagnosed with PPD. It didn’t make sense to me because I didn’t feel “depressed,” but I was so desperate for answers, I went with it. The doctor started me on a mild anti-depressant. I also started a healthy diet, hoping this would solve the other physical problems I was having. I thought I was making steps in the right direction.

Unfortunately, each day kept getting worse and worse. I realized the medication wasn’t working at all, and the new diet wasn’t helping either. I was extremely dizzy all the time, and my hands and feet kept going numb. I thought maybe I was just getting used to the medication. Or maybe I was on the wrong diet. I tried vitamins and changing my diet again, but neither helped. I felt an urgency to get answers, and now I realize I sensed my “break down” coming.

On August 6, 2012, three weeks after the visit with my family doctor, it hit.

That afternoon, the numbness in my hands and feet suddenly got much worse. I was dizzier and more lightheaded than I had ever been. My vision was blurry & I couldn’t think straight. It felt like I was in a fog. I started crying and shaking. I thought I was dying. I was terrified. I tried to call my husband, but I was having trouble speaking and he couldn’t understand me. He told me to call my mom, and then he rushed home. I called my mom and she said she would take me to the hospital. Things get pretty fuzzy after that. I only remember pieces.

I remember my mom coming to the house and she was talking to my husband. I remember thinking, “I’m sitting here dying and no one is doing anything! Why don’t they care?” Then I remember being in my mom’s car on the way to the hospital. I remember the nurse trying to talk to me, but I couldn’t really understand her. That didn’t matter much since I couldn’t talk anyway. Another nurse checked my blood sugar, then the next thing I knew I was in a wheelchair rushing to get a CT scan. I had no idea that everyone thought I was having a stroke.

I don’t remember the first scan, but I do remember some guy coming in telling me he’s going to give me an IV. I freaked out! Of course, I know what an IV is, and I know it’s no big deal, but at that point, I was too far gone. I could no longer see or understand anything anyone was trying to tell me. I could hear my mom in the room and I think she was touching my arm, but I couldn’t see her. The only thing I could get out was the word “no” and I just kept screaming it over and over as loudly as I could. I wouldn’t let anyone else touch me. I have never been through anything so terrifying in my life.

The next thing I remember is having the second CT scan with the dye (obviously, IV guy somehow got me to calm down long enough to put one in). I don’t actually remember the experience. I just remember the dye made me feel really warm.

After the scans were done, they took me to a room and I had a neat visit from a neurologist on TV! He asked me questions and examined me (I can’t remember what all he did, but I remember he zoomed in on my eyes once). I have to admit, that part was pretty cool.

Later the ER doctor came in and told us it was technically not a stroke. (I also found out later, that what I had is called a pseudo-stroke. My brain and body believed I was having a stroke. I had all the symptoms and I’m going through a similar recovery, but I didn’t suffer any permanent damage.)

He diagnosed me with Conversion Disorder. Finally, a REAL diagnosis that explained my symptoms!

The next day, I had an MRI just to double check that there was no permanent damage. Everything looked great, so I was sent home and told to schedule an appointment with psych. After we got home, I took a nap while my husband made a hundred phone calls. Over the next few days, I saw my therapist, my family doctor (to update him on my new diagnosis), and a psychiatrist. After more examinations, questions, and tests, they all agreed 100% with the ER doctor’s diagnosis of Conversion Disorder.

I’m still learning about my disorder. Apparently, what happens is my body “converts” stress into physical symptoms. Hence the name Conversion Disorder. Clever, huh?

Recovery has been extremely difficult. For the first few months after my “stroke,” I experienced all my emotions at once. I was angry, depressed, nervous, scared, and (occasionally) happy all at the same time. Physically, I was extremely sore, dizzy, shaky, and every now and then my insides felt like they were on fire. My mind and body were constantly fighting against me. I didn’t even get a break when I slept. During the day, I was consciously holding back my emotions, so when I fell asleep, everything would explode. I had terrible nightmares and many nights, I would wake up in the middle of a panic attack. Those first few months were so emotionally and physically draining, I didn’t think I would survive. And honestly, I didn’t want to.

Luckily, I did survive. My team initially estimated my recovery would take a year, but I have exceeded their expectations. I still can’t handle too much excitement and I still have to take baby steps. One of my major goals right now is to feel comfortable driving again. I can drive, but not often and not very far. I also still have extreme phone anxiety. I hardly ever answer the phone, even when it’s family. I haven’t checked my voicemail in months. And even though I’m writing this blog, it’s still difficult for me to think, read, and speak. It’s very frustrating for me because I have all these thoughts floating around in my brain with no way to get them out! Writing is actually part of my therapy. And if you enjoy reading my blog NOW imagine how great it will be once I get my brain back!