Wednesday, January 28, 2009

A Tale of Two Doctors

All doctors are not created equal.

That sounds so obvious, but it really hit home for me in the past couple weeks. I saw two expensive specialists, a neurologist and a cardiologist. They're both well reputed and came recommended.

The neurologist, Dr. P., is the one who sent me for the sleep study and then blamed my pain meds for my fatigue and sleepiness. Last week's visit was a check-back after being off narcotics for more than a month (actually, two months). My time with Dr. P couldn't have been more than about 5 minutes, during which time she went over an outdated list of meds I've taken over the past two years, asking me about five or six different narcotic pain medications I've tried. I'm not sure why my saying I'm off pain meds wasn't enough, but we went through the checklist, which included some meds I haven't been on since Fall 2007.

She asked if I was still sleeping a lot. I am. So she said I have idiopathic hypersomnia, which I thought we already knew. The whole appointment just left me shaking my head on why I bothered.

Then I saw Dr. John McAnulty, a cardiologist, last Friday. Wow. What a difference! His office fit me in fairly quickly after my internist got nervous about my recent fainting. I was in the office for over two hours, most of it with Dr. McAnulty and/or the fourth-year medical student who did the initial intake. And when they weren't in the exam room with me, they were brainstorming and consulting each other about my case.

I guess what blew me away was how warm and friendly Dr. McAnulty was. He radiated sincerity and sympathy, and was one of the few doctors I've seen other than my internist who really grasps how much this mystery illness has impacted my life. He actually apologized (!) to me that I've seen so many doctors and no one has been able to fully diagnose me yet. And he apologized that he, too, didn't think he had the answer for me.

[Side note: He is ordering an echocardiogram for me just to rule out that the inflammation I clearly have has not enlarged my heart and/or affected the lining of my heart. Both of those are risks for people with connective tissue autoimmune diseases. It's not that he thinks it's likely in my case, but he says it's been long enough since my last echo that it's worth looking since my symptoms have persisted. He's mildly concerned about my ongoing tachycardia, but says he strongly believes that any heart issues I'm having are secondary to my overall health issue. He ruled out POTS, but confirmed that my heart rate does go up even farther when I change from reclining to standing. He said that normally he would consider a low dose of beta blockers -- and he might anyway depending on what he sees at the echo -- but he says both my asthma and my low blood pressure are concerns with beta blockers. Oh, and totally off-topic, but he thinks I look like Jodi Picoult, one of my favorite authors. Since I think she's pretty, I did not complain about that comparison! Although I think it's mostly just a similar reddish tone to our curly hair that he saw.]

Dr. McAnulty is the first doctor I've seen that I left feeling almost a little sorry that my mystery illness didn't fall into his field. He just has the best bedside manner I've ever witnessed, and while I hope I don't ever need to see him regularly, I definitely know who I want to see if I ever develop cardiac problems.

The difference between him and Dr. P, who gave me a prescription for headache meds without explaining it to me at all, even that it would be a daily medication instead of something I took only when I felt a headache on the way, was just stunning.

Dr. McAnulty took the time to explain everything to me. He examined me closely, without rushing, and he took the time to really listen to my concerns and reassure me. I could see what a wonderful mentor he must be as he talked to his resident and medical student like they were, if not equals, people with opinions and insights he respected.

Dr. P, on the other hand, couldn't be bothered to look up the interactions of a stimulant she wanted me to try with my other medications. And I'm still a little flabbergasted that a neurologist wouldn't know that Ritilin, which has been on the market for decades, is a controlled substance and needed a paper prescription rather than being sent electronically. (There was voicemail waiting for me when I got home from that appointment telling me I needed to come back and pick up the paper prescription. Gee, thanks.)

If anyone needs a recommendation for a cardiologist in Portland, I've got one for you. Can't say the same about neurologists. If I need to see one again, I'm definitely not going back to Dr. P.

Meanwhile, the mystery continues.

Sunday, January 18, 2009

The Reason I Became a Reporter Instead of a Copy Editor Is Because I Hate Writing Headlines ...

Where to start?

I've been procrastinating updating the blog because I'm just a little bored of being sick and tired much less talking about how sick and tired I am.

I had two doctor appointments last week which were mostly uneventful. I saw the internist on Tuesday, although I almost called and canceled because I felt so crappy, but that's not usually a good excuse for your primary care doc. I didn't really have a purpose for the visit, since I'd gotten squeezed in the week before to discuss my more pressing stuff.

We talked about kids and schools and my decision to go ahead an apply for Social Security Disability Insurance (SSDI). Not that I've followed through on the decision yet, but I will, probably after I get through doing our taxes and applying for financial aid for Catlin Gabel for Ellie. (Man, I don't remember the financial aid forms in college being as complicated and detailed as this one!!)

I also finally remembered to talk about the headaches I've been having consistently since last May or June, whenever it was I started taking Vitamin D supplements. She doesn't think it's the Vitamin D, but said that my pain levels could be causing the headaches, or the fact that I don't sleep well can do it. It's just frustrating because I can't take ibuprofin, Tylenol doesn't touch them, and I'm still narcotic-free.

So here's the complicated part. I stopped at the pharmacy on my way home to pick up some prescriptions, including the meds she's given me for the headaches, and of course arrived right after a bunch of other people so there was a long line and the pharmacy techs were moving at a glacial speed. I usually grab a shopping cart just to have something to lean on, but I didn't think of it this time. So I passed out after standing in line too long. Hit my head on the shopping cart of the elderly lady behind me and then again on the floor. No blood, though, and ice took down the lump. But it still feels a little tender to the touch.

It's not a new development, this fainting. I actually fainted way back in July 2007, the day before I ended up in the hospital for over a week. That time, I was in line for a cashier at Target. (Is anyone besides me noticing a theme here? My internist says I'm no longer allowed to stand in line and she's going to give me a pass I can wave to go straight to the front of any line. I wonder if it would work at Disneyland ... :)

Anyway, I let them put ice on my head for me and refused their offer to call paramedics. They did check that my pupils were the same size, which they were. They were quite nice to me (but they always are, which is why I give them all my business).

I called my internist when I got home and let her know about it. She told me next time I want to faint, I need to do it at her office so I can be checked out completely. :) But she also called the cardiologist she had referred me to and asked that I be seen sooner than my Feb. 5 appointment. So I go in next Friday. We'll talk about my tachycardia and my internist's desire for me to have a chemical stress test. And I'll also ask him to check me out for postural tachycardia syndrome (POTS), which my internist thought should be considered after I brought her in an article that was recommended to me here. (Thanks again, Katie!!)

I also saw the neurologist who sent me for the sleep study. She had told me to come back when I had been off pain killers for a month, so I figured I might as well. What a waste of time. "Oh, you're still sleeping a lot and feeling exhausted and sleepy? Ok, then you have ideopathic hypersomnia." Oh, really? Tell me something I don't already know. She offered me Ritilin or Adderall to try, but they are contra-indicated with my anti-depressant. Also, I'm fairly sure that my fatigue and sleepiness are caused by my illness, whatever that may be, and she confirmed that those drugs would be unlikely to help with fatigue caused by an autoimmune disease or other health issue.

My internist had also told me to talk to the neurologist about my headaches, but she just offered me a migraine drug without really discussing my headaches at all with me. I don't plan to go back to her again.

Meanwhile, I'm just hoping to get through Ellie's birthday party tomorrow, and the parent interview on Wednesday at Catlin. Most likely a stressful week for me, which means an exhausting week. But c'est la vie.

I hope everyone has a good MLK Day tomorrow!!

Monday, January 5, 2009

When It Rains, It Pours

Well, not in the bad sense, as long as we don't get flooding like they say we might.

Good news first: My internist received a fax of the biopsy results from my endoscopy while I was there so even though I haven't heard yet from my gastroenterologist, I know that I definitely don't have celiac disease or pernicious anemia or whatever the third thing he was looking for was. All the biopsies came back "unremarkable." So that's good.

We also talked about the D-dimer test I got back a few weeks back that sent me to the ER for a CT to rule out a pulmonary embolism. I read at that one of the causes of an elevated D-dimer could be recent trauma, so I asked about whether my knee injury could be responsible for that test result. My internist said absolutely. OTOH, she also said it could be related to my elevated anti-Cardiolipin levels, which also indicate a clotting issue. So we'll see what the specialists think.

I also brought in a copy of this article, which Katie from Drew & Katie suggested I check out. I love the fact that Dr. Takano is totally open to considering anything I bring in and ask her about. She skimmed a little bit of the very long article, and agreed it sounded like something that should be ruled out. Since she also has wanted to send me for a chemical stress test, I asked about getting referred to a cardiologist. (My insurance doesn't require referrals, but I like to stay on the same page with my internist and I value her opinion.) Dr. Takano thought it was a great idea and picked out a doctor with offices at my favorite hospital.

That's when things got complicated. You see, our insurance changed on Jan. 1. I had figured, "Oh, it's Aetna. Everyone takes Aetna." And I didn't actually check into who was in their preferred provider network. Turns out, that favorite hospital isn't covered in-network. Oops. And neither was the practice the cardiologists she referred me to.

So I spent about an hour going through all my doctors in Aetna's search engine to find out if they're in network. All the providers I already see are, which is nice. Interestingly, my OB is a preferred provider, but the hospital she delivers at and performs procedures at is not. Sigh. I called the Aetna customer service folks to ask about that and was told that I can go to any emergency room and be covered at in-network rates, even if I'm admitted. However, if I had a scheduled c-section or needed to be induced or have another scheduled procedure, it would be covered at out-of-network rates for the hospital part of the bill. But the OB would be covered at in-network rates. Is that crazy or what??!

The other interesting (in a bad way) thing about this new policy? I thought we got a good deal because our out-of-pocket maximum went down from $1700 per person in 2008 to $1100 per person in 2009. The tricky part? The fine print says "flat-rate fees" such as office visit co-pays do not count toward that maximum, nor, when you reach it, do you no longer have to pay those co-pays. And since they raised the co-pay for specialists, as well as our prescription co-pays, I'm now worried that our medical bills are going to be higher than anticipated. Not that we had much of an idea how to anticipate, other than trying to pad that part of our budget as much as possible, but this kind of sucks.

Other noteworthy minor details:

  • I got copies of some lab tests that I'd been given verbal explanations of but not paper copies. Included in there was the last serum protein electrophoresis (SPEP) test to check on my levels of monoclonal immunoglobulin. They're still low enough that no one is freaking out or suggesting I hurry to a hem-onc again. But they've gone up slightly since I was last tested in April 2008, when it was essentially the same as it had been when they were first detected in October 2007. So, while I don't think it's anything to be alarmed about, I'll be talking about it with the immunologist when I go back in late February. And I'm guessing that means they'll want to continue testing it every 6 months rather than stretching it out to an annual test.
  • Both my platelet count and my CRP (which is a marker of inflammation) have both gone up some. They were already elevated three months or so ago, and they're a bit higher than they were. Interestingly (to me at least), while the CRP is higher than it was when I was tested previously, my ESR (a different marker of inflammation) is not quite as elevated as it sometimes is. (It's still three times what it should be, but it's been higher in the past. It fluctuates, as apparently all my various oddities do.)
Well, that's all the news I have. No more medical appointments this week (other than acupuncture), but I've got two next week.

A New Year, A New Medical Update

Happy 2009, everyone!

I'd like to say that my new year's resolution is to put my medical mystery behind me, but I'm not convinced that mind over matter works in this case. It's a good goal though.

After two weeks of being trapped in the house due to unusual amounts of snow in Portland, I had a flurry of medical appointments last week.

On Dec. 30, I finally made it to the immunologist for the allergy testing to the pneumonia vaccine so we can finish my immune system testing. I cheated. I've discovered that I'm really incapable of going five days without allergy medicine and still having lungs healthy enough to pass the breath test. So I took Allegra all the way up to the testing. Interestingly, when they did the first scratch test of the vaccine, they also do comparison scratch tests of saline and histamines. "Good, you're not blocked," the nurse said when she saw my strong reaction to the histamine. When I asked what that meant, she said that if I had been on anti-histamines, I would not have reacted at all to the test and they would not have been able to continue the allergy testing without that comparison. Although it made me curious about exactly how strong my reaction would have been without my allergy meds, I chose not to tell her or the doctor that I actually was on allergy meds.

Anyway, they did a scratch test and then a test where they put a small amount of the vaccine just under the skin. The immunologist said my reaction to the latter was borderline allergic, but we decided to go ahead and do it anyway. And I'm glad we did, because I don't think I reacted at all to the actual vaccine injection into my left deltoid.

So in early February, I get to go to a special lab to get blood drawn so they can run the same immune testing I had done last spring to see if my immunity to pneumonae has improved. They test 14 serotypes, and my doctor says a healthy person will have immunity to at least 75 percent of them. When he ran the first set of tests last spring, I was only immune to three and was "almost" immune (borderline, just slightly below the numbers they like to see) to two more.

The immunologist said that if I don't have an immunodeficiency now, he thinks I'm headed towards one within five to ten years and that they will need to run tests every six to 12 months to monitor it.

I asked how he would treat me if I do have an immunodeficiency, and he said I can get monthly infusions that would boost my immune system. I'm not sure what, exactly, the infusions would be of, but I suspect it would be IVIG.

In addition to repeating the tests the immunologist ran last spring, he also has ordered some looking at lymphocyte enumeration and functions. The test is apparently rare and complicated, so my blood will have to be flown to Las Vegas for those tests (Wish I could go too!!), which is why I have to go to a special lab. Apparently, there's only two places in the metro area that can handle getting the blood shipped off properly. Anyway, I googled what kind of information the immunologist would be looking for from those lymphocyte tests and decided I didn't like the answers I found. So I'm going to concentrate on hoping those come back perfectly normal.

Then on Dec. 31, I had an endoscopy and my gastroenterologist did biopsies of my stomach lining and duodenum looking for evidence of celiac disease, pernicious anemia and another similar disease I didn't catch the name of. He's looking for the cause of what appears to be an absorption issue since I've been taking megadoses of Vitamin D and iron for almost a year now, I think, but my levels haven't improved as much as they should have. I don't expect anything to come up there, but it will be good to rule those out.

The good news is that there were no signs of a new peptic ulcer. I do, however, still have a large area of scar tissue in the stomach near the entrance to the duodenum that looks red and inflamed. But it doesn't look any worse than it did when I had my last endoscopy in 2006 so it's nothing to worry about.

When Scott asked, however, the gastroenterologist repeated his admonition that I cannot take any NSAIDs like ibuprofin or prescriptions like diclofenac, without risking another serious ulcer. Sigh. It's frustrating because Tylenol really doesn't help at all, and if I'm ruling out narcotic pain relief, I'm really pretty much out of options for meds.

The endoscopy really took a lot out of me. I commented to Scott that for my previous endoscopies, I'd come home and sleep for four to five hours and be a little out of it the rest of the day but I'd be fine by the next day. Definitely not the case this time. I pretty much slept all New Year's Eve day and night, and then slept the vast majority of New Year's Day too. And I'm still feeling the after-effects of it. Scott pointed out that my mystery illness acts like a magnifying glass on everything else that happens to me health-wise, making my recoveries slower.

In theory, I'll have the results of the endoscopy this week. And I should know about my immune system towards the end of February.

Meanwhile, I'm thrilled that for once the meteorologists were right and the snow that was accumulating at bedtime last night really did melt by the time we woke up this morning. So Ellie is back at school after a three week break, and Scott is back to work, and I might stand a chance of building my limited energy stores up again.

I see my internist later today to discuss a whole host of topics, including that elevated D-dimer test I had a few weeks ago. I don't expect to come away with any exciting developments, but I'll be sure to update y'all if there's anything newsworthy from it.

I hope all of you are blessed in the new year with good health, prosperity and much happiness.