New Diagnosis: Midget-In-Tutu Syndrome

[UnicornIsis]

Let me say first off, there is NO OFFENSE INTENDED TO ANYONE. This whole thing started as a joke.

My husband is in the Navy. One weekend during basic training at Great Lakes in Chicago during February they got liberty for a weekend. The drill instructor asked them each what they were going to do before he let them all go. Since it was the middle of winter the options were a bit more limited. Most said things like go to the movies, go to one of the MANY local strip bars, etc. By the end of it they were each saying more and more outlandish things and building off of each other. When they got to my husband (he was single then) he said I'm going to find a midget in a tutu. The drill instructor actually started laughing then and walked away. So that is the running joke between us and his friends at work: "midget in a tutu" is the answer for almost anything you could possibly think of.

At the moment I'm trying to get a definate diagnosis for what looks like seizures but isn't. We were talking about it on the way home from getting groceries the other day and I said just once I'd like to have a diagnosis and NOT know what it is, instead other way around knowing what I have and NOT have a diagnosis. He popped out with "so you have Midget-In-Tutu Syndrome"? And I said YES!!! I have Midget-In-Tutu Syndrome. I don't know what it is, but I have a diagnosis!!

I was tried of having things and not having a diagnosis. So now I have a diagnosis, and don't know what I have! Sorry if this sounds confusing. It makes sense in my head anyway!

So who else has a Midget-In-Tutu Syndrome?

[luckygoat3]

I DO!

[Lulu]

i have a similar story.....when i first started getting sick, we had NO idea what was wrong and had seemily run the gauntlet of medical tests and Great Commands of the Body "You will faint, NOW!" etc... (HA! little did i know the pleasures that awaited me as NCS progressed to POTS, which has recently worsened for me!!!) but anyhoo, back in the seemingly-carefree "not knowing" days, people would ask what was wrong with me, & we jokingly (and naively) called my weird symptoms "Congo sleeping sickness," NOT AT ALL having even the TINIEST clue that a rare and often fatal disease called "African sleeping sickness (Trypanosomiasis) is REAL and very scary for many people.

we recently watched "House" on USA network and we're amazed & abashed at a pt's diagnosis of Trypanosomiasis.....AFrican Sleeping Sickness! have to say, after seeing that particular show and what that woman went through there are days i'm glad i only have POTS & NCS and *mostly* i get excellent medical care and have only come close to death once so far since my dx.

i keep a little list of things to be glad about in the Big Picture, especially when I want to throw myself a pity-party. #1: I am glad I don't actually have Trypanosomiasis. #2: I am glad Midget-in-Tutu syndrome came out after my diagnosis, because it sounds even sillier than telling people my autonomic nervous system doesn't work. Man, i think they look at me strangely now! What if I had been dx'd with M-I-T? Yowsa.

hope doctors can help. lol

peace and light,

lulu

[Guest Julia59]

How about Kirby's disease---instead of POTS.

Reason?----------because every time we try to explain this disorder to anyone, they look at us like were trying to sell them a Kirby Vacuum.........................

I hope you get some help soon, and get more answers---until then I guess you'll have to deal with Midget-In-Tutu.................for a name...........

Julie :0)

[persephone]

Haha, that's brilliant, Julie! Kirby's disease it is!