Friday, May 21, 2010

Medical Mystery

I haven't posted anything about my doctor's appointments on Wednesday, mostly because I'm so frustrated and angry that I don't even want to think about it and also because I still don't have any answers.

I went to see a family practice doctor at the local military hospital first. This was my third visit there in the last 2 1/2 weeks. Unfortunately, it was a waste of time. I did get a copy of my lab work to bring to the neurologist, but the family practice doctor was arrogant and dismissive.

When asking why I was visiting again for the same symptoms, I told her that when I'd scheduled the appointment I hadn't yet gotten an appointment to see the neurologist. They'd only called me the day before with a cancellation. I had intended to beg the family practice doctor to call the neurologist's office to try and get me seen sooner but of course this ended up not being necessary. Instead, I asked her about getting a referral to a rheumatologist or cardiologist to see about further testing. She refused. Instead, her advice to me was to go home, relax, and wait until I feel better.

I told the doctor about my situation and how I'm driving around with my children and no other adult here and how that's unsafe. She asked where my husband is and I told her that he's deployed. What happened next was unbelievable. First, she incinuated that I was lying about Jason's deployment. There's one unit here at this base that's deployed and apparently she knew he wasn't in that unit. She looked at my with disgust and said "Your husband's not stationed here, is he? Why aren't you at his duty station? You moved home to be near family?" And then before I could answer her she said "You should be getting treatment at his duty station, not here."

My world has been turned upside down for nearly three weeks now. I don't have the mental or physical energy to launch into a discussion about my personal life. I told the doctor that we'd been stationed here for 4 years before my husband left last January. Of course this led to more questions. "You aren't telling me something. He's not been deployed that long. Where is he really?" I explained that Jason was TDY first, followed by a deployment, and that I'm here by myself with no family. And then her solution: "You should be at Ft. Lewis getting treatment. We shouldn't be seeing you here."

So, there you have it. I'm wrong again. I'm damned if I do, damned if I don't.
I left the appointment feeling defeated. I can't beat the military healthcare system. I can't get the care I need and I can't get the help I need.

I'm so frustrated and disappointed.

I came back to Georgia for support, which I have found through my amazing friends and through my church. So far I have not seen any support from the military, in any way, shape or form. I can't get respite care. I can't get health care. It's so difficult to navigate the system.

For those who have asked about the possibility of Jason coming home, it's just not an option right now. He's got something very important going on right now (for the next several weeks) and he can't just ask for emergency leave. I also don't think that this would be best for the children. Sarah is very stressed out by any change already. She has gone right back to diapers again since my ER visit last week. These kids can't handle Daddy coming home and leaving again. If Jason were to be sent home for good, they'd send him to Ft. Lewis anyway, since that's his duty station. And I can't leave to go out there yet because a) I can't drive, and b) our house has not sold. I'm sure he could take emergency leave here, but I'm still hopeful that I can get the rest of this testing done before he'd be able to come back anyway.

Knowing that I'm going to have to do this on my own, I'm being proactive. I'm making phone calls. The command staff at the military hospital is going to hate me. I've already called the chaplain. I'm going to be the thorn in their side until someone gets this figured out.

After wasting my time at the military hospital, I headed to the big, civilian hospital downtown. I saw a very nice neurologist who was thorough in reviewing my MRI and CT scans, as well as listening to my history and performing an exam. She even called in another neurologist to get a second opinion.

Because my MRI was clear, they don't think that I have MS. Even though my pupils are different sizes sometimes, they told me this can happen in 40% of the general population and it doesn't mean anything. However, they were concerned when I asked about the possibility of a connective tissue disorder. (Finally, someone is listening to me?!)

The neurologists asked me what symptoms I had and I listed them. They asked me to demonstrate my hypermobility. I didn't even know that I score a 9/9 on the Beighton scale! They told me that my symptoms are indicative of a connective tissue disorder and that I need to see a rheumatologist for further testing. (Imagine that... I'm not crazy!!!)

The neurologists don't think any of the things that showed up in my MRI are the cause of my symptoms. In fact, they don't think it's neurological at all. They believe that the reduced reflexes and numbness in my extremities may be due to something cardiovascular. They told me that this would explain the fainting and could explain the dizziness. My blood pressure is fine though, and it was checked in various positions and did not drop drastically. However, my resting heart rate was 135 bpm. This was enough for them to write me a referral to a cardiologist and suggest that I be seen right away.

Of course, I can't be seen. Because I have to deal with Tricare. So now I have to wait until June 11 to see my PCM and then have them agree to the neurologist's referral. Then I have to wait for Tricare to process it. It could be July or August before I have an appointment. The neurologist said I need to have a tilt table test and some other testing to make sure there is nothing wrong with my heart. I know someone commented recently about a Holter monitor and that is something that the neurologist mentioned too.
I feel so lost right now. I have no idea what is wrong with me. I just know it's not normal.

Like the neurologist said, some doctors won't treat what they can't see. If they can't see it, it doesn't exist. And I look normal (relatively speaking, of course.) It's just everything on the inside that is not right.

I'm going to keep praying that I get some answers and that I get them soon. Whatever is causing this dizziness/numbness/tingling, it can't be good for me to just be sitting at home. Maybe I'm not having a stroke or a heart attack, but is it really safe for a (temporarily single) mother of 6 to be home alone and blacking out unexpectedly? It really makes me angry that they send me home to "rest" or suggest that I find someone to come and help me.

As a matter of fact, one of the most hurtful things that the rude family practice doctor said to me was that I need to relax and not worry about the dizziness and maybe it will go away. I told that if I seem anxious about the dizziness, it's because I'm terrified that I'm going to black out again while I'm driving with my children in the car. I'm scared to cause an accident and kill someone. But alas, her solution was for me to go home and take a nap.

Yes, this is government health care at its best.
Needless to say, I won't be napping. I have naked children that want to play in the mud and eat frozen bananas in the backyard. I have end-of-the-year standardized testing for my homeschooled kids. I have to keep my girls from burning down the house. And ever since the babies nightweaned a few weeks ago, I've been feeling more rested in the morning than ever. No naps here.

What I am going to do is go make myself obnoxious and start calling people on base. I'm not entirely sure who to bother, but I'm going to start with ACS, Military OneSource, Tricare, and the command at the hospital. I'll let you know how it goes. If anyone has any ideas about how to go about getting care in a more timely manner, or any advice at all, please leave a comment or email me.

In the meantime, I'm still a medical mystery.
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