Friday, July 25, 2008

Interesting New Test Results

Ok, they might just be interesting to me.

But my internist says she thinks the test results show my body is "declaring itself" that I definitely have an autoimmune disease. I'm waiting to hear what the rheumatologist thinks.

Anyway, my SED rate, which measures inflammation in a general-type way, is back up to 58. Normal is 20 and below. My most recent SED rate tests in June showed it had fallen to 31, the lowest it had been in a year, which I attribute to my taking lots of ibuprofin because I was having daily headaches. My rheumatologist didn't think my ibuprofin intake was enough to affect my SED rate so dramatically, but since I stopped the ibuprofin and it bounced right back up, I'm thinking I was right. (At its highest since the illness began, my SED rate was in the mid 80s.)

They also did a "C-reactive Protein (CRP)" test, which is another way to measure inflammation. My result was 4.5 and normal is 3 or less. I don't see in my records that they tested CRP previously, but I'm missing some blood test records so that might be one I missed. My internist thinks it was normal previously.

My ANA (anti-nuclear antibodies) test, which is a general, non-specific test for an autoimmune disease, is 29. Normal is 10 or below. Previously, I was considered a "low positive" at 18 last August.

My IgM levels of anti-Cardiolipin has risen to 75. It was 38 when first tested in July 2007 and was 49 in September 2007. It's one of the tests they do for Lupus, but is still non-specific. My IgG levels remain normal. My understanding is this test would be more specific if both my IgG and IgM levels were positive.

My internist was disappointed that after six weeks on a mega-dose (50,000 IU once a week) of Vitamin D has not yet significantly raised my levels. I was at 18.3 last week, up from 14.4 on May 19. The bottom range of normal is 30.

Also, my iron levels have fallen despite my increasing my spinach intake and taking iron supplements. I was 19.9 on May 19, and last week, I was at 18.4. They like ferritin levels to be at 50 or above. When I wrote about that in May, I had misunderstood my internist and thought she was saying I was anemic. I'm not anemic (I remain borderline, as I have been since childhood) but my iron stores are low, which could be a problem if I have major bleeding. But it isn't a serious concern now (except that they should be going up, not down, since I'm supplementing).


I go see a new neurologist this afternoon. My insurance company refused my doctor's request for authorization to prescribe Provigil for my intense fatigue. My insurance company said it only approves the drug for some sleep disorders (apnea, narcolepsy) and for severely debilitating fatigue induced by multiple sclerosis, and then only if two cheaper drugs fail to treat the fatigue.

I have a real gripe with that last part. There are many diseases that can cause severely debilitating fatigue, including lupus, rheumatoid arthritis, chronic fatigue syndrome, fibromyalgia. And those are just the ones that I think of off the top of my head. I know there are many more. Why only cover it for MS-induced fatigue??

I asked about trying one of the other two drugs the refusal letter mentioned, but it turns out they are not permitted with the anti-depressant (Cymbalta) that I take due to drug interactions. My internist is trying to put the pre-authorization request in again for the Provigil, this time pointing out the drug interactions for the other two. But in the meantime, she said the neurologist may be able to diagnose me with a sleep disorder that would allow the prescription.

Apparently, in addition to the well-known obstructive sleep apnea, there's a plain "sleep apnea" that my internist says can be diagnosed simply by intense daytime sleepiness and fatigue. And I definitely have that! So we'll see.

I'm also hoping the neurologist may have samples of the Provigil. I'm contemplating a formal appeal of the insurance company's denial, but before I go to the trouble, I'd like to know that the drug is helpful and the side effects not too troublesome.

I'm hoping I don't have to do a sleep study, but I am somewhat curious about how bad my sleep is. I feel like I don't get much deep sleep because I wake up so frequently due to pain from being in a position for too long. Most nights, it seems like I wake every couple hours and then have trouble falling back asleep. But I can't blame it all on my mystery illness since I've been a poor sleeper my entire life. (I just wish my daughter had gotten my husband's sleep gene instead of mine!! :)

Monday, July 21, 2008

Gap In Postings

I'm sorry it's been so long since I posted. I've been having a flare up of symptoms that started around the beginning of the month, and then our modem died a week ago.

It took a couple days to realize it was definitely the modem and not my ancient computer that was having trouble, and then we had to wait for Qwest to send us a new modem as a replacement. And of course the replacement modem arrived Friday evening and my ISP had discontinued its weekend support staff without my knowledge so everything had to wait until I could contact them today.


Anyway, my brain is a little fuzzy right now so I can't even think of what I wanted to write about while I couldn't, but I promise a real post soon.

Tuesday, July 8, 2008

Another Visit to the ENT

Well, it looks like the hearing damage I incurred from the mega dose of Salsalate I was on last winter was permanent. I saw an audiologist this afternoon who agreed with my assessment that my hearing was slightly improved from the February test (when I still had remnants of a double ear infection) but that it's still in the "moderate" level of hearing loss, and centered around the frequencies in which people speak.


The ENT is unhappy that I've had yet another round of sinus infection. He really wants to fix my sinuses and remove my polyps. He says the steroid nasal spray I've been using has shrunk the polyps somewhat, but my turbines (whatever those are!) are still over-sized and blocking the openings of my sinuses. He acknowledged that now is probably not the best time for me to undergo surgery, but he also warned that chronic sinus infections can worsen an autoimmune disease or rheumatological problem.

Sigh again.

Really, it's nothing new or unexpected. He has been jonesing to operate on me since early 2007. And it just hasn't been a real priority to me.

Meanwhile, for what it's worth, my pain levels have been down a bit the past couple days, which is good news. My fatigue, however, has gotten worse lately. I don't think either signify a real change in my condition. It's just more evidence of the cyclical nature of my illness, which waxes and wanes with no apparent pattern I can predict.

Monday, July 7, 2008

The Little Things

It's the little things that frustrate me the most about this stupid mystery illness.

My 3.5-year-old daughter, Ellie, has been in a bit of a Mommy phase these days. And since she's been a Daddy's Girl since birth, I live for these brief periods when it seems like I'm the highlight of her world.

For some odd reason, bedtime tooth brushing has been a traumatic thing lately, a major battle to get a tooth brush into her mouth and swipe as many of her teeth as we can before we give up in fear that we might injure her as she thrashes to get away from the toothbrush.

Tonight, she just wanted to cuddle against me, but when Scott went to brush her teeth, she tried squirming away and hit her head against the wall in the process. (I cringe to admit it, but it's actually easier to do a good job brushing her teeth when she's squalling with her mouth wide open.)

So afterwards, she didn't want to let me go. Usually, I help with getting ready for bed, disappear for story time and then she "finds" me in the master bedroom when she comes in to use the potty one last time before sleep. This time, she begged me to stay while Scott read Dr. Seuss' Fox in Socks, a current favorite.

She likes to lie on his stomach as she looks at the book he holds in the air above them. Tonight, she wanted me to lie down next to them. "I want to hold your hand, Mommy!"

Leaving out the fact that lying flat without extra pillow support is painful to me, what shocked me was how excruciating it was to hold her hand through the long (for a preschooler!) storybook. I kept trying to wiggle my fingers so she wasn't holding the entire hand but two or three fingers. But Ellie wasn't having any of that and would immediately correct her hold on my hand so she was firmly holding from my index finger to my pinky.

It reminded me of my older brother who, in his youth, liked to exert his superiority by shaking hands with me (and others whom he deemed inferior) so hard that he would press the recipient's hand bones together painfully, and rub the bones against each other. Mind you, I found it very handy when he did it to kids who harassed me, making it clear to them that the only one who got to bully his baby sister was him.

Of course, when Scott finished Fox In Socks and started to pick up Wacky Wednesday, another Dr. Seuss book, I apologized to Ellie and said Mommy had to go because Mommy didn't feel well.

It's not that she was devastated or anything. She gave me a hug and a few kisses and then settled back in for the next story.

But what kind of mom can't even hold hands with her kid for the time it takes to read a Dr. Seuss book? Somehow, in my mind, that erased the 20 minutes I'd spent earlier with her sitting on my lap as we read several books.

The score: Mystery Illness 5,392, Mommy 0.