So A Funny Thing Happened in the Hospital...

Actually, it would be more correct to say a funny thing didn't happen in the hospital.

I didn't have a seizure.

This was unfortunate, because I was there for a video EEG and the sooner I had a seizure, the sooner they could record/measure what was happening and I could go home. After the first day, I started trying harder. I started eating lots of sugar, which is my kryptonite. Nothing.  I started taking large doses of the Fancy Folic Acid, which usually does the trick. 

Nope.

Then I tried both together and all I got was a headache.

Finally, I had Himself make up a vile concotion containing a huge amount of sugar, and after I took that AND the folic acid AND ate a large, carby breakfast, I finally queezed out a medium-sized seizure on the fourth day.

I have never had to work so hard to make one happen before. My problem is usually getting them to stop.

After I got home, I pondered this. Why was it so hard to seize in the hospital?  Usually, I just spike my blood sugar a little and boom!  I could think of two things that were different in the hospital:

1. My activity level there was nil.

2. They had been injecting me with blood thinners as a precaution.

I didn't think it was #1, as I have had periods of inactivity before. So I Googled "blood thinners seizures" (or something)  and I found this disease called Antiphospholipid Syndrome (APS), AKA Hughes Syndrome.  I read through the symptoms, checking most of them off as I went. Talk about a lightbulb moment!  After almost 8 years I had something that seemed to fit about all of my neurological symptoms. 

I will spare you the begging I had to do to get tested for this. But it happened and the initial tests came back positive for APS .  The treatment is blood thinners, however and the neurologist didn't want to manage that treatment plan. I went to my haemotologist and he wanted to send me back to neurology for management.  Sigh...  More begging ensued and he agreed to manage a trial of an injectable blood thinner.

It is working.

The seizures aren't completely gone, but are reduced enough that I am not in constant fear of having one.  I hadn't actually realized how much that had ruled my life until I had to worry about it a lot less.  And now that the fear is diminished, I feel I want to do more; go out more. Get more active! But it's not that simple. because I have other symptoms; extreme fatigue, joint pain and swelling.   So now I have to focus on getting that fixed. 

I changed rheumatologists (my previous one flat-out refused to test me for APS despte having SEEN me seize on the floor of the examination room).  The new guy did a bunch of tests that the last one failed to do. My bloodwork is still mostly fine for rheumatological disease, but he x-rayed my hands and feet. Both show signs of joint/bone damage consistent with an inflammatory arthritis. We don't know which one yet, but will be starting treatment regardless. Needless to say, I am very angry at my old rheumatologist right now, but that's a story for another day. 

The good news is I feel I am finally getting somewhere at last. 

After almost 8 years. 

 

Comments

[Dee]

I haz a HUUUUGE grin!!!!

[Wynda]

This is fantastic news! I'm thrilled that not only are the blood thinners effective, but also you're feeling so up.

I don't want to be negative, but for people who love you, it's impossible not to bitterly resent the eight years of suffering and all the bad doctors you endured.

What number is the new rheumatologist? Good lotto number. ;-)

[One Sick Mother]

Thanks guys. I'm not at the end of the diagnostic process yet, but it is in sight, which is a big relief after so long.

Wynda,

I'm pretty angry about those eight years, too. Especially as this is technically rheumatological and my original rheumatologist was someone I saw very early on, before I even lost my job to this.

The current one is ...#42? I've kinda lost count. Definitely in the 40s. It's shocking, no? I have joked that when I get the final diagnosis codes, I'm playing them in the megamillions.

[Heather]

Oh Hallelujah! I just checked in to see what was new and I'm so happy for you.