Results...And More Waiting

Thursday night I came home and there was a message on our answering machine from my new PCP, stating she had the results of my blood work and asked that I call her back on Friday. I played the message twice, verifying it was the doc calling and not some assistant. It was the doc. It's one thing if the assistant calls - that likely means that everything is ok. To have the doc call - that means they found something. The stupid Cleveland Clinic MyChart was down so I couldn't see my test results online, so I spent the night nervously wondering what showed up.

Friday morning I went into work at my usual early time. Put in a couple of hours and then it was time to call. I got an assistant, who pulled up my record and then oddly told me to please hold. My doc was then on the line with the news. My ANA levels were high. ANA stands for antinuclear antibodies. These ANAs work against your autoimmune system and basically "attack" your body. The average ratio is 1:40...mine was 1:640. The doc was concerned about the high number and suggested that I get in to see a rheumatologist as soon as possible. Though the PCP has limited knowledge in this area, the high ANA count likely means I have some sort of connective tissue disease. The most known of this type of disease in this category is lupus, which I definitely do not have. However, there are a few others types that sound like they may be a fit. Usually this type of disease is genetic, but in my case there is no history on either side of the family.

It's tough to get medical news at work, and in the morning, because you're really helpless. I had no idea what this type of disease was, the symptoms, treatment or if there was a cure. I had about 20 minutes at lunch where I did a few searches, with little information. I also signed online to see my test results, and found out that another ANA level was also high (scored a 7.7 rating when the standard was 1.1 or lower), and my platelet count is low (110,000, when the minimum should be 150,000). This all ties in with that connective tissue disease.

After a nice dinner with B, I started to do some research. What I found is:
1. There is no way I can diagnose myself because this stuff is just too complex. I have to wait for the doc to do their thing.
2. There is no cure, only medications to help people live decent lives
3. The disease causes damage to the organs, typically making it necessary to take medications to try and prevent heart, lung and kidney damage. In the end the disease usually does enough damage to the heart or lungs that it is generally the cause of death. I'm not saying people die in their 30's, but they won't live to see 90. It sounds like even 70 would be a stretch.

There is another factor in all of this. Sometimes high ANA rates can be caused by a reaction to a chemical in the body. I have metal and silicon in my low back from two surgeries - is this a cause? I was fine until after my first surgery. I first started noticing the odd pain (outside of the pain caused by the vertebrae fractures) 6-7 months after the surgery. It then progressively got worse, to the point where I'm at now. Is it just coincidence, since this type of disease usually occurs in women in their 20s/30s...or is my body having a difficult time with one of the implant components?

So basically I have results, but yet I don't. Still a lot in the air, and a lot left to determine. I was not expecting the blood tests to find anything at all - I really thought it was nerve-related. I find myself thinking of the pain differently; I'm almost more aware of it now that I know it's cells in my body causing this, and not just nerve damage.

I think what struck me the most was a description I read about the disease last night - that it's basically the body attacking itself. It's an interesting statement, because I've often said to B that I feel like my body is attacking itself. It appears my perception might have been pretty darn accurate!

In the meantime, it's just too much to think about. So, I'm just going to continue with life. Family, work, home, play...just continue on. March 13 will be here before I know it, and I'll deal with whatever happens when it happens. No need to speculate or guess. I'm leaving it up to the professionals for now.

1 comment:

Chrissy said...

Typically things are worse in our mind than what actually turns out. Try not to worry - trust you're on the right track, and hopefully you'll get some answers that do something...FINALLY!