The Today Show has a new feature, Today’s Medical Mysteries.
Kelly’s been undiagnosed for 8 years.
The segment features the National Institutes of Health Undiagnosed Diseases Program. The program serves 50 to 100 patient participants annually. About a year ago, a friend suggested I contact this program. I didn’t. I feel as though I would not be considered. Unlike Kelly, I have not been hospitalized for days, months because of my condition(s). Instead, I have surgeries, tests, infections, and I wonder what’s next. My leg problem first surfaced over 20 years ago. Twenty years ago, I had already had ten surgeries on my ears. Whether there is a connection to any of my symptoms, I do not know. If my situation is important enough to enter a brilliant NIH program, I am doubtful.
I believe House, MD has brought an awareness and interest in undiagnosed illnesses. As a patient, I find House fascinating but I doubt I will ever discover a link to my issues. I have only seen a couple of episodes, but the problems seem a bit far out. For example, I was intrigued by an episode that started with a businesswoman who suddenly felt a paralysis and pain in her right leg. I DVRed the episode in hopes of a clue for me. Not so much. She was bulimic and had been abusing Ipecac syrup that lead to life threatening myopathy and respiratory failure. I have never taken Ipecac syrup.
I’m reading Every Patient Tells a Story by Lisa Sanders. I’m enjoying it and I am learning about how doctors approach my fellow medical puzzles. What’s interesting is that a theme is a secret the patient does not reveal that is critical to their diagnosis. I saw this with the House Ipecac episode. I suppose I need to think of what I might be leaving out.
Questions and comments are always welcomed.
Filed under: Uncategorized Tagged: | doctor patient relationship, National Institutes of Health Undiagnosed Diseases Program, undiagnosed chronic illness
I liked that book a lot! I don’t remember most of the cases in it revolving around information the patient failed to provide. But I guess the case that stays with me the most from the book was the young woman with liver failure at the start of the book. In that case, it was mostly a matter of a new set of eyes looking at test results that had been ignored and having a eureka moment.
At least, that was the message I took from that book — that people like me with mystery illnesses have to keep plodding away at the medical system, seeing new doctors and putting our case before new sets of eyes.
It’s *so* easy for us to get discouraged and give up on the medical system. I go through phases where I do that, at least, and then phases where I’m determined to keep undergoing tests and doctors and whatever until it either goes away as suddenly as it started or they figure out what’s wrong with me and find me a treatment that works.
Have I mentioned that I’m going to see my third rheumatologist in a month or so? Cross your fingers for me …
*hugs*
Fingers are crossed!!!!!!
Btw, if you haven’t already read it, the NYT Magazine did a great article last year about this program. Worth a read, although like you did with the Today episode, I came away from it feeling like my health problems are miniscule by comparison. (They even focused on a woman from Portland, Ore.)
But y’know, that shouldn’t make you think you shouldn’t apply. My understanding is that they’re not just looking at the hardest cases, but for unusual ones that might have applications for others. It’s a lot of work for your doctor to put together the materials for your application, but you should ask her if she’d consider it anyway.
I did ask my PCP to do the paperwork for me, but I’m pretty sure she looked at everything they want before they’ll consider a patient and decided it was too much work. I need to get the courage up to ask her point blank whatever happened to it because she sounded very interested and willing when we first discussed it but I never heard about it again after I sent her all the info and a consent form.
*hugs*
Hi Aviva,
Just started coming here and reading this weekend. I saw your comment on seeing your 3rd rhematologist this month and I wanted to say good luck. I know how hard it can be to steel yourself for something like that. Be well.
- Laura
Hi Laura,
Aw, thanks for the good luck wishes! I really do appreciate it! You sound like you’ve had similar experiences? If you’re blogging about them, please post a link! I find that just knowing I’m not the only one going through this kind of thing helps a lot. And I find it encouraging hearing other people’s stories who have gotten through the mystery part to find a diagnosis.
Meanwhile, you’ve found a good blog to follow! She’s a wonderful writer and empathetic friend.
This is neat. Gotta go check it out. Thanks for posting it.
I make a point out of telling each new doctor, “I’m going to tell you every little detail that I can think of and let you sort through it, because I have no clue what little tid-bit is going to be that golden clue for you.”
I tell them that in a fun light-hearted way that usually gets a laugh and starts our meeting off on the right foot. It’s after that, that it usually goes down hill