Wednesday, June 8, 2011

Neurology here I come!

So now I'm up to August of '09. The Humira injections were still every week. For a few months they were a breeze. The syringes were much easier than the pens. I was still feeling the same though. No improvements on the exhaustion. My knees, wrists, fingers, and ankles were sore all the time.

One Saturday I was standing in the kitchen. I gave myself a shot in the stomach, and then I don't remember what happened next. My husband said I passed out, hit my head on the kitchen cabinet, and started convulsing. We didn't know at the time that even though it looked like a seizure it was just a vasovagal response. My husband called 911, then his parents to come get our daughter. The ambulance comes and brings me to the hospital.

We stay there all night for them to tell me nothing is wrong and to go home. They give me a paper and say come back if you have these symptoms. No tests were done, off I went.

The next day I stay in bed. My head is killing me (and I never get headaches). So am I just being a whimp? My blood pressure goes up to 165/116. I'm dizzy, incoherent. We go back to the ER and they say "well ya of course your head hurts. You have a concussion. Let's do a scan of your head". HELLO!!! That bit of information you left out the first time I was here!! Seriously?? You guys are doctors!!! Just prove my theory right on CT care.

A scan was done. It was clear. I was discharged again and told to follow up with my primary doctor on Monday.

Monday comes and I see my primary doctor. I can't even walk. I'm nauseous, dizzy, head pounding. He says nothing is wrong. Now keep in mind we still think I had a seizure. I had one before and I have passed out a few times in the last few years. He sends me down the hall for a blood test. I have to go in a wheelchair because I can't even stand. The doctor says he will do more follow up if I have another episode. We leave frustrated of course.

A few weeks go by and I see my rheumatologist and he asks about the incident and is livid when he finds out my primary doctor didn't do any follow up. He literally flips out. He calls a neurologist at Beth Israel and makes an appointment for me later in the week. He also takes me off the Humira because now I have such anxiety about giving myself the shots. Since I passed out I had to have an EMT friend give it to me.

I see the neurologist, give her my whole medical history and she is concerned. I do one of those tests where they put all those electrodes on your head for a few hours. That test shows nothing so she has me come back to do the test for 48 hours. That also shows nothing. Based on my history she thinks it's a genetic disease in my muscles. I forget the name. There are two components that will show up to tell you that you have the disease. After a blood test I had one component. I was admitted into the hospital in December because they were going to monitor me with the electrodes for a week, and do a spinal tap to check for the genetic disease.

I do not wish a spinal tap on my worst enemy. My sister was holding me up and said she stopped counting after 7 pokes into my spine. The doctor doing the spinal tap...yeah it was her first one.

The next day I am discharged from the hospital and I go home. Back to CT. This was a Tuesday. By Thursday I feel horrible. Bad bad headaches and like I said before I never get headaches. The weird thing was when I lay down I am fine. When I sit up I feel like a truck ran over my head. Turns out I am leaking spinal fluid so my brain isn't floating in my skull like it's supposed to. On Friday I go back up to Boston for a procedure. They draw blood from my hand and inject it into my spine to form a clot over the hole where the spinal tap was done. To plug the leak.

I feel better within a few hours although I had a dull headache for a few weeks. Oh did I mention all this happened a few days before Christmas? Yes that made for a wonderful holiday.

We get the spinal tap results and there were no traces of the 1st component that showed up in my blood but the 2nd component did. My neurologist sent me to doctor that specialized in whatever genetic thing she thought was going on. He said my readings were borderline very low so I did not have this mystery disease. I wish I remembered the name.

It was finally determined that the only thing wrong with me was the rheumatoid arthritis. The passing out was all because I was starting to have an aversion to needles. Really?? Doesn't everyone?

Next I'll continue with my RA treatment and what my doctor decided to do next.

Until then...take care :-)

1 comment:

  1. The more I read about your diagnose phase of ra, the more I realize just how far we need to go with this disease. That Humira reaction..I had a very similar one. I have alot of med allergies and it happened on the first shot. If you search anaphalatic shock you will see that blood pressure dropping happens to 30% of people having an anaphaltic shock reaction. For me I stopped the Humira after the first shot. Since you had seizures in the past, maybe the Humira might have triggered one. And my daughter has this problem with needles. Recently she passed out while getting a standard blood draw while sitting in one of those chairs. A previous nurse friend of mine said that the body can react this way...some kind of defense mechanism to the blood draw/needle. Waiting for the rest of this story with baited breath :-)