It’s really difficult not having answers.  It’s beyond frustrating when you can’t get the answers no matter how deeply you look.

Here we are at Day 11 of of Neurological Mysteries©.  Seriously, I feel like my daughter should be on an episode of House.  Hell, I wonder if House could even figure out what is wrong with her at this point.

Blood work – normal

CT Scan – normal

MRI – normal

EKG – normal

The only things that we don’t have back are her EEG (we will get these results Saturday at her appointment) and abdominal ultrasound.  At this point it looks like she has the worse case of normal that anyone has ever seen.

I am suspecting at this point her diagnosis is going to be dystonia because the doctors can’t figure it out and they can’t find any of the obvious suspects.  “Dystonic reaction” (whatever that means) is listed as one of the things that *may* be wrong with her on the report from the neurologist that I took to our GP.

While I was researching dystonia I came across a story about a young woman named Desiree Jennings.  People may or may not have heard about her but it seems she’s become an internet meme of sorts.  Rather than paraphrasing her story, thanks to YouTube, here is the original news clip that aired about her medical condition.

Since this aired around a year ago, there have been a number of other news stories including a story about her on 20/20.  The links: Part One, Part Two, Part Three

Because she appears to be getting better, has times of remission, and now talks with what has been described as a British or Aussie accent there are a good number of people who honestly believe she is a fake and made all this up because she is an attention whore.  Doctors, including some that have never treated her but are basing their opinions on her videos, are saying that it’s not dystonia and it’s probably all psychosomatic – (translated: “in her head”).  Maybe it’s because I am dealing with something similar in my daughter and we don’t know what it is, maybe it’s because I deal with disabilities everyday in my own family, but I took all the negative comments personally.  This sort of crap does more harm than good.

First, I don’t know Desiree.  I had never heard of her until this week even though she’s been all over the internet with her story, her progress and as an internet meme.  That being said, why in the hell would anyone want to fake a medical condition, especially one that is so debilitating and odd?  Here’s the thing, Desiree is pretty and she was going to be a professional cheerleader.  She already had a ton of attention so don’t tell me that attention is a motivating factor.  I refuse to believe that anyone would trade the attention that comes with being a pro-football cheerleader for giving that up and making a hobby out of visiting doctors.

Second, we don’t know about everything about the human body and I am sure there are diseases out there that don’t have names yet.  The brain is one of the most complex parts of the body and any number of things can go wrong.  I have a daughter with an auditory processing disorder where axons that transport messages are missing in her brain.  Some days, her good days, she seems normal and compensates well.  Other days, her bad days, she looses her ability to read and will completely forget words often substituting something only vaguely related, often with amusing results.  One incident I recall she was talking about my stuffed dragons and lost the word “dragon” and substituted the word “pony” after a long pause.  So she has a good day where she can process like a normal person, that doesn’t mean she doesn’t have a disability.

Everyone with a chronic condition has good days and bad days.  I am plagued with arthritis and fibromylagia (a disease that many people don’t believe in) and some days I feel almost normal while other days I will scream in pain from the lightest touch.  On my worst days I feel like every bone in my body has been broken.  Because I have days I am almost pain free and can get around easily does not mean I don’t have a medical conditions.  The same goes for Desiree.  I have no idea why people who don’t know her expect her not to get better.  It’s almost like they want her to stay disabled.

I don’t know what to make of Dr. Buttar either.  I am not completely sold on his sort of medicine.  I have seen where his kind of bio-medical therapies have worked for people and I have also seen where people have dumped a lot of money into chelation, supplements and the like to have it do nothing and they end up not only more frustrated than when they started the therapies but also out a lot of money.  I can also understand when people are presented with a condition that takes away their normalcy that they want to try everything they can to restore it.  Did Dr. Buttar help Desiree?  She believes he did.  If nothing else, he at least did something and tried to help.  It’s more than everyone else did who claimed it was all in her head and sent her on her way because they didn’t know what was wrong or what to do.

Now, I don’t know if I believe that what happened to her is because of a flu vaccine but I don’t disbelieve it either.  I remain on the fence.  It could have been her flu vaccine, or the timing with the flu vaccine could just be coincidence.  What I know is when we took my daughter to the ER, then to her neurologist then to our GP I was asked by the ER doctor and our neurologist if she had recently had any vaccines.  That alone means that some doctors recognize that some vaccines will cause dystonia.

The other thing that upsets me about the entire thing is that one of her doctors and a number of doctors who haven’t treated her and say “It’s not dystonia but we don’t know what is” claim it’s all in her head.  It saddens me that “It’s in your head” is still considered an acceptable “diagnosis” when doctors can’t figure out what is wrong because they are presented with something that isn’t a textbook case.  The “it’s all in your head” cop out causes a lot of damage and leaves medical conditions undiagnosed.

From about the time I was 14 I had a lot of problems related to that time of the month.  I was put on birth control at 15 to help with the problems.  It worked for about two years and then I started having even more problems.  I was in a lot of pain and very sick for about two weeks every month.  The doctor that my mother picked kept telling me all my menstrual pain was because of stress or “all in my head” despite finding cysts on my ovaries.  Three years later I needed surgery because of endometriosis.  I spent three years living in unnecessary pain and being unnecessarily sick because a doctor decided my menstrual problems were all in my head.   It almost cost me my fertility.   My husband was told the same thing about being extremely tired all the time and still having symptoms of a number of his chronic medical problems despite them being treated.  It took two doctors to figure out what was being missed – undiagnosed narcolepsy, celiac disease and extreme vitamin D and B12 deficiencies.  Many doctors still tell patients that their fibromylagia pain and symptoms are “all in their head”.  Being told “it’s all in your head” is a dangerous medical practice and it’s something people should not accept.

This doesn’t mean that I don’t believe there are people out there with psychosomatic problems.  I do, and most of those people have had something very traumatic happen to them.   Best I can tell nothing traumatic happened to Desiree.  Nothing traumatic has happened to my daughter and yet part of the neurologists’ report, under things she thinks *might* be the problem, has hysteria listed.

It’s 2010 and  doctors still seem to hold antiquated beliefs and are practicing antiquated medicine based on those beliefs.   No good can come of this.

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