Saturday, April 09, 2011

Misdiagnosed

The summer of 1990 was a hard one, but little did I know that the following summer would make it look like a vacation by comparison. It started out fun with my first trip to Disney World, but quickly went downhill from there. I came home from vacation to find out that I'd been fired and if that wasn't bad enough they did it through the mail. I also came home with several small lesions on my lower legs that were purple, smooth, and looked like burns.

A friend of my mom's sent me to his very expensive dermatologist who was also an expert in rare skin diseases. He took one look at it and knew what it was. The biopsy result confirmed his diagnosis. Necrobiosis Lipoidica Diabeticorum*. He told me I needed to get to an endocrinologist right away because only diabetics get this skin disease. I knew that couldn't be right because I didn't have diabetes, but he insisted.

My mom's friend helped out again by sending me to the best endocrinologist he could find. The visit is a bit of a blur, but I do know the man never took any blood for tests except for the finger prick for a blood sugar test. He wrote a lot in my chart, but didn't talk a lot. He never even shared the blood sugar test result with me. He simply said I had Type 2 Diabetes, gave me a couple of pamphlets, an exchange diet booklet from the American Diabetes Association, and a stern warning that I needed to lose weight. I was too deep in shock to realize that I'd basically been given the bum's rush out of this guy's office.

The pamphlets were vague at best and he never mentioned a return visit at all. A few week later I called his office to find out when I should come back and was told that I didn't need to because Type 2 Diabetes was all about self-care. The nurse informed me that the doctor said he couldn't do anything for me if I didn't lose at least 100 pounds. When I asked how I was supposed to do that she replied that she didn't know but maybe I should stop eating so much. Yes, she actually said that. And to add insult to injury she said it in quite a snotty way. My response will NOT get me sainted for sure. I said, "Really? And I bet you'd be less of a bitch if you stopped breathing," and I slammed the phone down.

Over the next 6 months, I cut out as much sugar as I could. Switched to diet sodas, unsweetened tea, and stopped eating candy. Even though I didn't really eat or drink much of that anyway. Of course the pamphlets didn't say anything about carbs or how to check my blood sugar. I had been on the exchange diet when I was a kid due to Hypoglycemia, but it had changed and I couldn't make much sense of it. I did the best I could and moved forward.

It seemed like each day I was hungrier than the last. No matter what I ate, I never felt full or satisfied. I started bring snacks to work to stop the gnawing stomach pains. It seemed like I was constantly eating. Small Ziploc bags of cereal & other snacks would surround me at any given moment at work or home. And despite all the eating, I was losing weight.

At first it was gradual, but as the hunger increased, so did the weight loss. A couple of pounds a month turned into a couple of pounds a week in what seemed like the blink of an eye. Worse yet, my personality began changing. I had always been a perky and happy person. Almost annoyingly so. Suddenly I was moody and grumpy. Where I once sprang out of bed each morning with a smile on my face, I now crawled out of bed with a grimace and often remarked that I felt like I hadn't even slept. I was constantly tired and just generally felt bad.

This went on for nearly a year. I wouldn't find out until June of the following year that I had been misdiagnosed. If the so-called specialist had bothered to do any real blood tests on me, he would have known right away I had Type 1 Diabetes. If he had stopped looking down his nose at me and looked past my weight, I might not have had the three-month-long battle to save my foot and ankle.

Looking back now, I know that I'm lucky I survived. There are so many things that could have happened during that time. On any one of those restless nights, I could have easily slipped into a coma and never woke up again. I could have had kidney failure due to diabetic ketoacidosis. I could have lost my foot and my ankle because after all that time and stress on my body it just simply couldn't heal. I definitely got lucky. Really lucky.



The next chapter of my diabetic life story continues in the post I wrote for the Diabetes Social Media Advocacy website - http://diabetessocmed.com/2011/participants-point-of-view-life-stages-w-diabetes/




*http://emedicine.medscape.com/article/1103467-overview

3 comments:

Simon said...

Hey Cheri,
I almost can't believe it. You must have been copying the notes straight from my medical file. I came to diabetes down an almost identical road.
Necrobiosis was really the first issue that drove me to the doctor and like yourself I too was misdiagnosed as a T2. With similar growing frustration I dropped the bundle and decided to forget about the problem altogether. Over the next couple of years my necrobiosis soon developed into a huge "cavity" on my leg and a whole raft of other complications set in.
I guess I only have severe DKA to thank for my corrected diagnosis. Unfortunately it seems to be quite a common thing.
It is great to find someone else who has bee down that rough road. Whilst my leg still looks like a war zone, the corrected diagnosis and "vindication" that came with that gave me the impetus to start getting treatment.....
Anyway enough of me, thank you for sharing your story!

Princess LadyBug said...

Simon,

No wonder we hit it off on Twitter. :P

I'm sorry about your leg. I've been really lucky with mine. Of course, there isn't really any room for them to crater. I have bird legs and I'm not even kidding. I carry almost all my weight in the belly area. My arms & legs are almost skeletal. Not an attractive look, I assure you. :P

I hope we can share notes on our legs soon. (Wow, that sounds pretty creepy.)

Karen said...

Here is another Type 1 with the dreaded leg stuff, but I was diagnosed when I was 8 and developed the necrobiosis in my early teens. I find the necrobiosis the hardest thing for me to deal with.