The difference between being a mystery and being a case study

August 17, 2014

When my doctor asked if he could discuss my case in the doctors’ case study meeting, I felt sort of glad. That’s been hard to explain to my healthy family and friends, but to me, it makes perfect sense.

For years my symptoms were dismissed. I was labeled a mystery. One doctor told me there was nothing anyone could do to help me and I should stop seeking medical help. The attitude could be summed up as, “If we can’t label it, we’d rather not think about it.”

The first time I felt like a case of interest was about six years ago. I’d had a biopsy done of some skin on my breast. They thought it could be cancer. I waited and waited and waited for the biopsy result. Finally, late on the day the result was due, I called the doctor. She apologized. It had taken several different pathologists to figure out what I had, because it turned out to be something very rare. It was benign, just hard to label. When I went back to get the stitches out, she explained that the pathologist had been excited to see this rare thing he’d only ever read about. It’s so rare, most pathologists don’t get to see it. And she asked if she could take a picture of the remaining patch on my breast for his files.

The thing is, at that point, we already had a diagnosis. The mystery was solved. This time it’s different.

Before I left my doctor’s office the other day, he asked if he could discuss my case in their case study session. He promised he wouldn’t use my name, but that wasn’t what I was thinking about. I was thinking about why he wanted to use my case. I had a rare confluence of medications, symptoms, and test results. I had diagnosed sleep apnea that was perfectly treated with a CPAP machine, but after a couple months the CPAP stopped working for me. The results showed odd breathing patterns. I had recently gone off of my progesterone prescription, which can be known to have an effect.. The timing is rare enough, but I took a bio-identical progesterone, which is very rarely prescribed. To see a confirmed case of sleep apnea produce these odd breathing patterns would be interesting on its own, but to have the progesterone prescription affecting this was unheard of.

On the one hand, it sucks to be in a situation like this, where there’s no known solution. On the other hand, my doctor isn’t dismissing me. Quite the opposite: he wants to study me. He does research in addition to seeing patients, so this could be to my advantage. I’m going to have another sleep study. Usually sleep studies are supervised by technicians, but mine will be supervised by the two doctors I saw on Friday. They do this with very few patients, and while I wish I didn’t need the special treatment, I’m very grateful to be getting it.

My first choice would be to have my breathing problems resolve themselves. But since that’s very unlikely, having a top doctor monitoring me while I sleep, adjusting CPAP settings on the spot, trying different mask types, and doing all he can to find a cause and a solution to this problem is by far the best second choice I could have. Hell, I would never have even thought such a thing was possible.

After so many doctors dismissing me because I’m a mystery, I’m thrilled to have a doctor who would rather study me than dismiss me. So I’m glad to be a case study. Maybe it means I’ll finally get some answers.

4 Comments | Expectations, Fatigue, Healthcare, Medication, Raves, Symptoms | Tagged: , , | Permalink
Posted by chronicrants

What it means to have a respectful doctor

August 15, 2014

I learned a while back that I have to be an educated patient. It’s the only way I’ll ever see any improvement in my health.

My health is too important to just assume that every doctor always knows what’s best for my specific case. After all, my endocrinologist may know a bit thyroid issues but really specialize in something else. My rheumatologist might know plenty about rheumatoid arthritis but nothing about my unlabeled connective tissue disease. Or they may know a lot about my conditions, but not enough about the other specialties to figure out how they all connect. No matter how you look at it, I have to be educated.

Unfortunately, some doctors don’t like this. They don’t want to take the time to answer questions. They don’t like being challenged. Most of us have experienced these kinds of doctors.

But then there are the others.

There are the doctors who appreciate my effort. They like talking to a knowledgeable patient. They take the time to answer questions and explain terminology. They maybe disagree with my assessment, but they don’t dismiss it out of hand. They consider it.

Today I saw one of those doctors. I haven’t seen many over the years, but he’s one of them. Dr. T is hard to see. He’s one of the top in his field, so there are long waits to see him. He was looking at charts of my test results today. Actually, three people were looking at the charts: Dr. T, Dr. D who works with him, and a medical student (it’s a teaching hospital, so this happens a lot.) I quietly stood behind them to see the charts, too. Suddenly Dr. T turned to my empty chair, saw me standing behind him, and gestured me over – he wanted me to see my charts! I was shocked, but then he did something that completely stunned me – without being asked, he began to explain the charts. I didn’t know how to read them, and I very much appreciated this explanation.

A little while later Dr. T and Dr. D mumbled to each other. Then they began to explain the medication they wanted me to take and exactly why they wanted me to take it. Unlike doctors who just shove a patient out the door with a prescription, these two wanted me to understand the plan. I explained my discomfort with the potential side effects and Dr. T got slightly impatient. He said that if I want to treat this issue, none of the options are great and I’ll have to make a choice. I agreed, and pointed out that my health is my top priority and that’s exactly why I was questioning everything, because I wanted to be able to make an informed decision. He no only supported me by answering all of my questions, but he even seemed to respect my position.

I left that appointment feeling good about our plan for figuring out the cause of my new symptoms. I felt listened to and respected. I felt like I was a part of the plan for taking care of my body. But mostly I felt that I had an ally, someone who would be there when I needed help and would do his best to provide that help. And isn’t that how we should always feel about our doctors?

Have you ever had one of these doctors? Have most of your doctors been this way? What has your experience been? I’d love to hear about your experiences in the comments!

17 Comments | Educating, Expectations, Healthcare, Medication, Raves | Tagged: , | Permalink
Posted by chronicrants

Dreaming of meeting people to date

August 7, 2014

I’ve never been followed by legions of suitors. That’s just not who I am. I’ve seen it happen on tv. I’ve seen it happen to friends. But it’s never happened to me. And I’m ok with that.

But there was a time when I dated. Maybe I didn’t date often. Maybe I didn’t go out with a new date every week a la Sex & The City or Friends. But I dated.

But that was in the old days, when I was healthier. When I went out. These days, I stay in most evenings. Evenings are tough for me. When I do occasionally go out in the evening, it’s a real effort, and I only do things I know I can handle, like quiet evenings with friends at someone’s house. This is fun, but it doesn’t exactly lend itself to meeting new people. Sure, I’ll occasionally meet someone new, but usually my friends’ friends are already in relationships. What I need is to really go out. I need to attend meetup groups where I can meet single people. I need to get used to flirting again. I need to feel comfortable enough in my body that I’m not constantly wincing in pain.

I’ve worried in the past about meeting someone who could handle my health issues. I’ve finally come to believe that there are people out there who would not see my health problems as major obstacles. But how will I find those people? I know plenty of people who were ill before they married their current spouse, but usually they met their spouses when they were well enough to leave the house. Where would I meet someone now? At the grocery store? In a doctor’s waiting room? Sure, those are possible, but I’m not exactly counting on them.

After years of fearing any sort of commitment (for reasons completely unrelated to my health,) I’m finally ready to be in a serious relationship. I’m ready to meet that person who makes my heart flutter. If only I could leave the house enough to actually find them.

Note: I sincerely hope that one day my regular readers will see me writing about improved health, dating, a relationship, travel, a job of one sort or another, and the other things I’ve been hoping might still be possible some day. I haven’t lost that hope, even if some days I feel a bit discouraged.

13 Comments | Expectations, Fatigue, Frustration, Limitations, Pain, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms | Tagged: , , | Permalink
Posted by chronicrants

Are doctors actually helpful?

August 4, 2014

A friend started medical school today. I bit my tongue. I wanted so badly to ask what he actually hopes to accomplish by being a doctor. Does he really think he’ll help people? Because I’m not so sure.

Ok, to be fair, some doctors are helpful. If I had cancer, I’d probably want to see a doctor. Ditto if I had a heart attack. Some of them are useful. Just not the ones I’ve seen.

The other day I posted about doing some genetic testing. I wanted to see if I had a mutation on the MTHFR gene. I had asked my primary care doctor for the test, but he said they prefer to run an MMA test to check enzyme levels. If that test is abnormal, then they run the other. This sounds logical except for 1 glaring fact: the MTHFR mutation doesn’t reduce the number of enzymes, it reduces their efficacy! So I have the right number of enzymes, but they only function at about 30% of what they should! So the MMA test was normal. But the test I chose to pay for and run on my own shows that I have the mutation afterall (the A1298C mutation, for those who are interested) and it’s homozygous, meaning I have the mutation from both parents. If I had listened to my doctor, I’d never have known.

Last week I posted about my frustrations with indicative lab results from years ago that I just discovered. Of course, that was just one example. I have found many lab tests that showed important keys to my health problems and that, if they’d been addressed, could have helped to prevent my current level of poor health. The doctors knew enough to run the tests, but not to address the results!

There was the doctor who told me that there was nothing to be done for my pain, that I’d seen plenty of good doctors, and that I should just learn to live with it and stop seeking medical treatment. I was 19. And I stupidly took his advice for several years.

There was the doctor who told me I wasn’t lactose intolerant. He didn’t suggest doing anything to help me with my constant digestive problems, he just said that I wasn’t lactose intolerant. I was young and intimidated and scared and didn’t push him. Going through medical records last night, I found the note from the specialist he had consulted. She had suggested further testing and potential causes for my problems. He never did any of those tests or followed up in any way. It took another 12 years, 3 gastroenterologists, 1 naturopath, and a lot of my own research to figure out I had leaky gut, Celiac Disease, and IBS.

A pediatric surgeon told me that the Olympic gymnasts (the Olympics were currently taking place) managed to compete with worse pain than I had so I shouldn’t be so upset by it. I was 16. I drove right to my best friend’s house and cried.\

When my fatigue stuck around long after my mono was gone, my doctor kept telling me to give it more time. She kept insisting I’d get better in a few more months. I never did. She never once considered that the mono virus triggered an autoimmune condition, even though that’s a well known possibility. It took another 10 years before I figured out that connection.

I can’t count how many times I asked for tests that doctors said were unnecessary, only to later find out that I did indeed have the things I wanted to test for.

I told a doctor that I felt instinctively that my wrist pain, back pain, and knee pain were all related. He insisted I was wrong. It took many years to find out I was right.

The doctor who first diagnosed me with an autoimmune condition ordered an ANA test. Then he flipped through the huge stack of medical records I had given him and found two previous ANA tests that were both high. They weren’t high enough for a diagnosis, but they were high enough that they should have been flagged. They weren’t. I should have been retested regularly. I wasn’t. I have no idea if more than those two were run. Of course, his test came back incredibly high and I got the diagnosis that week. I’d had symptoms for 11 years. That was already more than 11 years ago, and I’m still getting more diagnoses.

*****

Ok, you’re probably wondering what the point of this post is. I started with something else in mind and it has turned into a rant, and I’m ok with that. These days I’m feeling unusually frustrated and angry about my past health care. So I’m letting it out. And I hope that maybe this somehow falls into the hands of a medical school curriculum designer who can start making the necessary changes to doctors’ training. Because some of us don’t fall into the neat boxes that doctors are trained to search out. Some of us have messy health problems. And we deserve the same great care as the people who fall into those neat boxes.

There are some fantastic doctors out there. I’ve had one or two of them. And I hope my friend becomes another one. But I remain weary. I see doctors because I must. I see doctors because I want my lab tests paid for by insurance, because I need prescriptions and would rather get them legally, and because occasionally they are able to help me with a simpler problem. But I’m continuing to do my own research. I’m continuing to be vigilant. And I’m continuing to be distrustful. And after reading just a few of the many ways I’ve been screwed over, can you blame me?

Please add your own story in the comments. Vent a little and get it out of your system!

8 Comments | Expectations, Fatigue, Frustration, Gastrointestinal, Healthcare, Limitations, Medication, Pain, Rants, Symptoms | Tagged: , | Permalink
Posted by chronicrants

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