March 24, 2008

Why Me?

This isn't another rant about how come I got dealt a crappy pancreas. It's about something else.

Last year I went to the skin doctor who did my melanoma surgeries. He found another "precancerous" lesion and removed it. So I asked him whether the Januvia I'd been taking might be harmful to me because of the way it suppressed DPP-4 which is known to be implicated in the process that keeps melanocytes from going metatastic.

This guy is an MD/PhD and pretty sharp, and, incidentally, he saved my life after the other local skin doctor told me the big brown patch on my chest was nothing to worry about. So I figured maybe he'd have some ideas.

Instead he said, "Wait a moment," and left me in the cubicle in the skimpy johnnie for about fifteen minutes. Then he came back and told me that all he could find online that had any information on the subject was on one web site. With a sinking feeling, I asked him if it was on and sure enough, it turned out to be mine.

I had something similar happen last week. I read an article in a newsletter published for practicing endocrinologists written by some endos who have been diagnosing patients with MODY here in the U.S.

Since the only doctors I'd previous found who had even heard of MODY were treating it in the UK, I quickly fired off a letter in which I mentioned my site and added that I hear from quite a few people diagnosed with MODY who are frustrated that their doctors only give them a diagnosis and no other information about what to expect. I also asked a couple questions that grew out of both my own experience and that of the people around the world who email me.

The author wrote back that he had checked out my web site and loved it and was going to refer his MODY patients to it. But no, he didn't know anything more about any of the questions I'd asked. He hoped that the information exchange my site makes possible would add to our knowledge about MODY.

Tag. I'm it.

The media are full of articles extolling how web-based patient information is transforming the treatment of chronic diseases. The New York Times had a big article on this topic just yesterday. But what none of these articles points out is that the patient movement is fueled by dozens if not hundreds of people like me who put in literally thousands of hours answering emails, posting on bulletin boards, and participating in the blogsphere for free. Doctors, last time I checked, bill $500 an hour to give their advice, even though, as may people with diabetes have learned, that advice is often dead wrong.

Don't get me wrong. I'm happy I can help people. And I'm happy that I'm hearing from an increasing number of MDs who tell me that the information on my site is extremely helpful to their patients. But I'm not happy about the system where doctors can answer any request for information about a serious condition with a shrug, a referral to my web site and leave it at that. And when I have to pay them to find out that I know more than they do about something very important to my health.


Lili said...

I am amazed at the lack of accurate information. When I was first diagnosed, I went a year as a "Type 2" with NO treatment, partly because when I (and I am a librarian) tried to research diabetes, I couldn't find anything about me. Nothing. I even checked out all the textbooks from the medical school library and read those, but they seemed to be wrong in many cases (and now I know they were).

Almost everything I know I've learned from other "patients." I've since been able to find other people who had a similar presentation to mine (which I've been told by doctors "doesn't exist" - um, thanks). When I go in to see my endo, I find that I'm telling her the results of my research, which she's very interested in. Still, what can I suggest to her? The facility just isn't there for doctors to get *accurate* information about diabetes that fits with what we, the patients, experience. We're supposedly in the midst of an epidemic (of Type 1, too, if you look at the rates), yet it often feels to me like not many people know anything.

We're supposed to be so medically advanced, but every time I see a doctor in the ER, they ask me if I treat my Type 1 diabetes with "insulin" or "pills." My (now-fired) highly recommended primary care doctor refused to give me a prescription for Lantus, because I "already have insulin" (Novolog). Then there's the kind of advice I got when I was supposedly Type 2 - but I can sum it up as "eat more carbs and exercise less."

So what do we do?

nonegiven said...

I just referred a doctor to your site the other day.

Nicola said...

Jenny - not only are you "it", I find some information I hadn't picked up on before every time I read your web site - and I've been coming regularly for 4 years. I think you're a heroine :)


migraineur said...

How embarrassing for that doctor! I can't imagine being a professional and having a patient or client say, "Um, yeah, that's actually MY website."

Keep the faith, Jenny. You're doing a great thing. And I can't wait for your book to come out - I am trying to flood an aunt of mine with books about diabetes, because she is stuck with a doctor who thinks FBG of 170 is "not bad, considering" and another doctor who wrote the neuropathy in her feet off to spinal stenosis. Hey, it may even really be caused by SS, but wouldn't you think the first thing that might jump to a doctor's mind when dealing with a diabetic who is experiencing neuropathy is, well, diabetes?

Jenny said...


I believe the way they sort out the neuropathies is whether or not they are symmetrical. Mine are not, and hence every doctors believes they are caused by my ruptured disc. The MRIs bear that out. And stenosis is a very common reason for fluctuating non-symmetrical neuropathy. So it is very possible that diagnosis is correct. That's one they can visualize on MRI.

But I won't discourage you from getting your aunt more information. Give her the book. Don't say anything, and resist the temptation to make her control yours. That often works against helping people, because a lot of us, self included, if someone wants us to do one thing, well, it becomes very tempting to do the other.