A couple of days after my last post I found myself in the Emergency Room.
It was something I wasn’t expecting at all. Despite what I had written about a few days before, things had been relatively stable.
It was monday morning. I took 8 to school. I was in a good mood, a productive one. I took my iPad and phone up to my bed. I was sitting there making long needed appointments for the family. My cats were curled up near me. I was on hold with one doctor’s office. Suddenly something came over me. It was like a “whoosh” feeling that began from my head and went down to my toes. I couldn’t explain it then, I can’t explain it now.
As that happened I suddenly fell over to the left. My whole body just tilted over. The tremors began. I grabbed the side of the bed to keep myself steady. I was aware of what was going on, but I was terrified. My eyes wanted to close. I struggled to keep them open, and my head up. I was dizzy. Just trying to grab my phone to find someone, anyone, felt impossible. I cried. I tried calling my friend Jess. No answer. Then my mom. No answer. My husband. No answer. I managed to text my brother who would know where our mother was. Told him it was an emergency. He called me back. I explained what was happening. He told me she was out of town for a day. Something about Galena. Ok.
I told him I think it’s a seizure. Not sure. I’ve had this happen before the last couple of months. A couple of times. Not sure why or what they were.
Jess finds me first. She says she can be there in a half hour, she’s out. I call the doctor, talk to the nurse. She tells me she will not hang up until my friend gets there. We have a 30 minute conversation. In that time, I finally stop tremoring enough to lift my head. To walk downstairs. Husband calls and he immediately leaves work. Jess arrives.
The nurse told me to go to immediate care which I didn’t think twice about, but now disturbs me because with their limited ability to treat me whether it was a seizure or my MS, why would she not tell me to go to the ER? Because I went to the immediate care. They couldn’t do anything for me and within 45 minutes they sent me to the hospital. Where I spent the next five hours.
Tests. Tests after tests. The focus for some odd reason was on my chest. At one point the technician came to get me for a chest x-ray. Now here’s me, in a hospital bed, thinking either I had a seizure(as I had epilepsy as a child) or it was a rather odd & wicked MS exacerbation, and someone wants to take a picture of my chest? It made no sense. And as someone who has spent the majority of their whole life in and out of hospitals, I questioned it.
Later it turned out my blood tests showed mild clotting, which they then told me was also common in those of us with MS & other immune disorders. So then I spent nearly 2 hours taking in radioactive fumes via mouth to light up my lungs to check for a blood clot. Which was, surprise! Negative. I could have told them that and saved my insurance a lot of money.
I was discharged and told not to drive till I saw my neuro later that week. And when I saw her, she told me she didn’t think it was a seizure. Despite my mother sitting there saying that she dealt with my seizures for nearly 2 decades and my descriptions of what was happening was damn similar. The Neuro’s reasoning was that I wasn’t unconscious.
I have no words. So angry. I think I’ve read more about my type of seizures over the last 44 years(I developed them age 1, they slowed down by 20 with only two in my twenties that we know of) than she has. I recounted this whole visit to my father that day. And he said the same, ” you were NEVER unconscious during your seizures”. I knew this. They weren’t the typical. I lost faith in my Neuro that day.
We’re still not sure what’s going on. I’m noticing a pattern. I thought they were panic attacks. But I don’t think so anymore. It’s something else. The Neuro wants to think it’s a combination of MS and hormonal.
Whatever it is it threw a monkey wrench into my life this week making me feel as if I couldn’t even take care of my own family. My friends were amazing and I owe them everything. They took care of 8, picking her up and driving her everywhere when I was unable to drive. I don’t like asking anyone for anything so this was hard for me.
Next weekend I restart the Tecfidera. My mother told me after the Neuro’s appointment “You put everything off, to take care of everyone else. But now you’re seeing the end result. You’re actually getting sick. They need you here to take care of them, so it’s time. Take the meds, or you won’t be here for them “.
I’ve gone this long. Nearly 25 years with minimal medication. I’ve defeated so many odds according to the doctors over the years. But I’m no longer invincible, I’m not the superhero I thought I was.