Friday, May 14, 2010

Is This Some Kind of Sick Joke?

I know everyone has been wondering where I am and what is going on, and I'm going to explain. I'm fine, I'm sane, and I'm still here. (Basically!)

It's been almost 2 weeks now since I started having this crazy dizziness. I'm really having a hard time describing it, and originally I posted that it was like spinning. But a more accurate description would be floating. I'm dizzy, and sometimes lightheaded and feel like I might faint, but generally I just feel kind of floaty. Have you ever taken a strong pain medication? A narcotic? Well that's what I feel like. Like someone slipped me a handful of Percocet and I'm five feet up off the ground. Not the worst feeling, all things considered, but definitely disturbing because it won't go away and I have no idea what's causing it.

In addition to the dizziness, I have a strange numb and tingly sensation in my extremities and up my spine, along the back of my neck, and across my scalp. It feels sort of like the pins and needles feeling that you get when your legs falls asleep or something. It's odd. Sometimes it feels like an electrical current is running through my body.
Needless to say, I want to get to the bottom of this. What is wrong with me? I am sure a lot of people now assume that I'm crazy, that anxiety or depression has sunk in, and that I'm losing my mind. The doctors don't seem to agree. Anxiety or depression can cause dizziness and similar symptoms, but these are almost always acute, lasting a few seconds to a few minutes. Not 2 weeks. And not 24/7, whether sleeping or awake, sitting or standing, active or resting.

The first visit to the doctor's office was useless. They did an EKG and checked my blood pressure. They ruled out a heart attack or stroke and sent me home.

The second visit to the doctor's office was a bit more successful. The doctor ruled out a lot of simple causes and determined that it's not a peripheral disorder (like with my ears) and is more likely a central disorder (like with my brain.) At least that's what he thinks. What I'm experiencing isn't vertigo. I don't have the classic nystagmus (side to side movement in my eyes) that they expect to see with vertigo. Nor do I have the nausea and vomiting that usually accompany it. I don't have any signs of fluid in my ears or any signs of a sinus or other infection.

The blood tests they've run have all come back negative. Anything simple like anemia has been ruled out. They even checked my thyroid and did a fasting blood test for diabetes. I'm the picture of good health! Well, except for this permanent acid trip that I'm on...
The second doctor referred me to a neurologist. The problem is that the soonest appointment they have isn't until July 14th. And although the military insurance says we have the right to access care within 28 days, there is no recourse if you can't get care within that time. Unless I want to go to a non-network provider and pay out of pocket. Not. There isn't even a neurologist at the military hospital. Despite my best efforts, I can't get a regular appointment if I do things "by the book."

On Tuesday night, I noticed that my pupils were different sizes. I know this is usually a sign of a concussion. The thing is, I haven't hit my head lately! I was a little freaked out and decided it was time to go to the ER. As I was talking to a friend and getting ready to leave, I heard an awful sound coming from the girls' bedroom. It was the unmistakable sound of vomit. Leila had apparently eaten too many blueberries and her stomach rejected them. I couldn't leave her so I stayed home.

When I woke up Wednesday morning my pupils were normal. I called the eye doctor and made an appointment for the following morning. I was diagnosed with the early stages of glaucoma last year, after having increased optic nerve pressures for several years. I was sort of hoping that my strange symptoms might be caused by something crazy going on in my eyes.

I arranged to have a friend's daughters come watch my children on Thursday so I could go to the eye doctor. My eye examination was uneventful and the eye doctor said that my optic nerve pressures were still high and that there were changes in the optic nerve itself. But she could find no reason for my dizziness. She reminded me to schedule the appointment for my glaucoma vision testing (where they check to make sure I'm not losing peripheral vision) and sent me on my way.

As I was leaving the eye doctor's office, I was having a lot of trouble with coordination. I was stumbling a bit and nervous about driving. I decided to go to the ER. Knowing that the military ER would not help me, I decided to head to the closest civilian ER. Like I said before, I can't do things "by the book" right now because otherwise I'll just never get this figured out.
I walked into the civilian ER and was taken into triage immediately. They triaged me and had me in a room in under 2 minutes. The doctor came in a few minutes later and the next thing I knew I was getting an IV and lab work done. It was so fast! Nothing like the military hospital where you wait for 6 hours just to get into an exam room. (To all those who are so excited about Obamacare and free health insurance, let me caution you. You get what you pay for.)

My blood tests again showed nothing out of the ordinary. The ER doc called for a neurologist to come examine me and ordered a CT scan, with and without contrast. I was taken back right away and the CT results came back almost instantly. Nothing. No signs of anything funky in my ears or sinus cavities, or anywhere else. Good, but also worrisome since we still don't know why I'm dizzy.

The neurologist came to see me and did a full exam. His findings were disturbing. I have reduced reflexes in certain places as well as poor motor coordination on the right side of my body. He asked if I'd ever been diagnosed with atrophy of my pupil. Huh? I don't even know what that is but he said my left pupil was cloudy. My left pupil was the one that was dilated the other night. And, interestingly enough, when the eye doctor did my exam she dilated my pupils and my right one returned to normal right away, while the left pupil was dilated for more than a day. I have no idea if it means anything, but I thought it was strange.

The neurologist was certain that he knew what was going on and told me that he wanted cervical and brain MRIs done, with and without contrast. While I was waiting (two hours) for the MRIs, he wanted to start me on the first dose of a five-day IV steroid treatment. For what? For MS. As in, multiple sclerosis. (Like I don't have enough multiples already?!) He told me he was certain that I had MS and he wanted to start the treatment now, rather than waiting. There was no discussion, and they started the steroid treatment.

They took me back to have the MRIs done and I thought I was going to die. I would have been fine if I wasn't laying on my back, dizzy as hell, in a spaceship tube. I asked the technician if she had a sticker or a picture I could look at so that I had something to ficus on while I was in the tube. That worked wonders! I taped a page from a magazine up inside the tube so that I could stare at it. It helped keep my dizziness in check. Without a focal point, my body was totally floating all over the place, or so it felt. Once I could see that picture, I was ok. Two hours later, after being injected with contrast and coming in and out of the tube multiple times, I was done.

At this point it had been eight hours since I'd arrived in the ER. And it'd been 10 hours since I'd seen my children (or nursed my babies!) I was dying to go home. The neurologist wanted to admit me to the hospital. I refused. He agreed to let me go home and come back in the morning for a spinal tap and more steroids.

However, it's never that simple. The MRI results were inconclusive. My insurance won't cover any more treatment at the civilian hospital. I can't been seen by another neurologist until I get to Washington, unless I go back to the ER, or unless the neuro's office here has a cancellation. The neuro from the ER called me and we spoke at length. He still believes I have MS. I am not so sure. From what I've read, it looks like 95% of MS patients show lesions on the MRI. I didn't. So maybe it's something else? The neuro told me that he "doesn't start looking for zebras" until he's "looked at all the horses." So before he starts looking at whatever other rare disorders there might be, he wants to rule out MS. And that requires a spinal tap. And so now I wait.

I'm still hopeful that this is something silly... like maybe a pinched nerve? I am going to go to my chiropractor next week and see if that does anything. I just hate going there because it's an hour drive (round trip) and it's so expensive. I was visiting him 4 times a week during my pregnancies and we just couldn't afford it. Too bad that military insurance only covers chiropractic care for the servicemember and not their dependents.

So, here I am. I'm alive. I'm dizzy. But I'm ok. However, if you would like to diagnose me, please feel free. I would love to know what is wrong with me!

Oh, but please refrain from attacking my parenting choices. Because my mother already took care of that one! She yelled at me and told me that this is my fault for not putting my kids in daycare or school. Now they are attached to me and I can't leave them to go get medical care. (As best I can figure out, she's saying this because I told her I wasn't going to go back to the ER yesterday. Because my insurance won't cover it. And I wouldn't want to leave the kids anyway.) She actually said that my sweet children "need to learn that Mommy isn't always going to be there." And when I suggested that perhaps now is not the best time for them to learn that, what with Daddy being in Iraq and all, she told me I shouldn't tell them where Jason is anyway. And that is also my fault. Jeez, I can't do anything right! (Can you see me riolling my eyes?)

Now that I've already had to defend myself against my mother, I'm really not in the mood to discuss why I don't want to leave my (homeschooled, still nursing-some of them!) children for days at a time. And I have already talked to Jason about the possibility of him requesting R&R. He has already signed the memo stating that he's not taking R&R and so I'd have to have a good reason to bring him home for 2 weeks. Right now he may be losing his platoon SGT though, so the timing is terrible. We are going to wait and see what happens in the next week and then decide from there. We both agree that him coming home for 2 weeks might be even harder on all of us so it wouldn't necessarily be a good thing.

Anyway, that's the whole story. My crazy life. High as a kite and don't know why! Go start googling. First person to correctly diagnose me gets something. (Not sure what!)

P.S.- My mom's biopsy results came back... right now it's not malignant! She goes back in a few months for another mammogram to make sure that doesn't change.
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