24 April 2009

We HAVE NOT found the right doctor.

I'm not going to bash on the doctor in particular, just their obvious lack in knowledge with not only Cataplexy but also Conversion Disorder. Yes, Conversion Disorder.

You see, my sleep study showed that I have no Narcolepsy. It also showed that I was awake during attacks of Cataplexy, or CD as the doctor now thinks.

Why does this post seem to be off to a bitter, bitter start? Well, it's for two reasons.

One, due to the doctor's words last week, that, "Without a doubt my symptoms were Cataplexy" I was hopeful. Desperately hopeful that after so long we had found the doctor who could help us get the care I need. Unfortunately, that's not true, and I feel it was wrong of the doctor to say that because it gave my parents and I false hope. Now some may say that maybe I shouldn't have believed it, but...I didn't think it was wrong to take that and HOPE.

Two, the doctor showed a lack of knowledge on Cataplexy, Conversion Disorder, and my medical history, none of which impress me.

I'd like to quote this article for some info.

"The sudden loss of muscle tone in cataplexy is similar to rapid eye movement (REM) -associated muscle atonia during sleep , but it is occurring during wakefulness."

"A cataplectic attack is sudden in onset and is localized to a specific muscle group or parts of the body. The subject is lucid during this attack and it is important to recognize that consciousness is always maintained at the onset of cataplexy. "

Both of these pieces state that the person with Cataplexy remains awake during the attack. It does say in the article that if an attack progresses to further loss of muscle tone and longer periods, then the person may experience sleepiness, REM sleep, and hallucinations. I won't fight the doctor there, as I have experienced all those things during long attacks. I've even gone through a full night still in an attack. We know this because "the onset of cataplexy is associated with the absence of deep tendon reflexes that comes back with the return of normal muscle tone. This is a simple test that differentiates cataplexy from other drop-attacks."

And I've had multiple doctors/EMS/other people note that I have no deep-tendon reflex during an episode. That's not something you can make go away people.

Here again, it states that people do not loose consciousness during an episode of Cataplexy, they simply cannot move.


I'm bringing up all this info because the doctor said there were two reasons I didn't, couldn't have Cataplexy.
Because I stayed awake during the episode, and because I didn't loose full muscle tone.
They tested this not while I was in an attack, but as I was coming around from one. The tech captured on video me coming out of the attack, and when she put my arm over my head and let it fall, I pulled my arm from my face.
This drop test is a good way to see if someone has control over their movements, because your body won't let your arm hit your face. The only way it will hit your face is A) Your muscle tone is compromised somehow; either your unconscious or you can't control your muscles, or B) You purposely let it hit your face.

Well, at that point when she did the drop test, I did have minor control over my muscles again, in fact I was trying to talk to her. So no, my arm didn't hit my face. However, if you do it while I'm actually in the attack, it'll hit my face, or head, or something. I've gotten bruised lips and eyes from my hand hitting my face, because I couldn't pull it away.

Now Conversion Disorder is the new answer. This brings me to my other two problems with the doc. If she had read my history, she would know that a diagnosis of Conversion Disorder was made last year and ruled out. Their advice? Start seeing a psychiatrist.
I've been seeing one since June. He happens to be the one that made that diagnosis of Conversion Disorder last year. He was also the one who revoked it!
So why are we going back to this?

These are the criteria for making a diagnosis of Conversion Disorder taken from this site.

"Diagnostic criteria for conversion disorder as defined in the DSM-IV are as follows:

  • One or more symptoms or deficits are present that affect voluntary motor or sensory function that suggest a neurological or other general medical condition.
  • Psychological factors are judged to be associated with the symptom or deficit because conflicts or other stressors precede the initiation or exacerbation of the symptom or deficit.
  • The symptom or deficit is not intentionally produced or feigned (as in factitious disorder or malingering).
  • The symptom or deficit, after appropriate investigation, cannot be explained fully by a general medical condition, the direct effects of a substance, or as a culturally sanctioned behavior or experience.
  • The symptom or deficit causes clinically significant distress or impairment in social, occupational, or other important areas of functioning or warrants medical evaluation.
  • The symptom or deficit is not limited to pain or sexual dysfunction, does not occur exclusively during the course of somatization disorder, and is not better accounted for by another mental disorder.
According to psychodynamic theory, conversion symptoms develop to defend against unacceptable impulses. The primary gain, that is to say the purpose of a conversion symptom is to bind anxiety and keep a conflict internal. A fairly transparent example would be leg paralysis after an equestrian competitor is thrown from his or her horse. The symptom has a symbolic value that is a representation and partial solution of a deep-seated psychological conflict: to avoid running away like a coward, and yet to avoid being thrown again.

According to learning theory, conversion disorder symptoms are a learned maladaptive response to stress. Patients achieve secondary gain by avoiding activities that are particularly offensive to them, thereby gaining support from family and friends, which otherwise may not be offered."

Let's recap why he ruled it out.
-The attacks do affect my voluntary motor function, but also my involuntary motor function, i.e. deep-tendon reflex.
-The ONLY prior trauma the doctors have that precede the initiation or exacerbation of the symptoms is me watching my dad burn when I was 4. Yes, it was mental and emotionally scarring. Yes, I still have nightmares.

Do I pass out if in a TV show a guy is on fire and then my family pays attention to me where normally they wouldn't? No. So how does it fit?

"True conversion reaction is rare. Predisposing factors include extreme psychosocial stress, and perhaps, rural upbringing."

It doesn't fit.

So now....now we wait. We start looking elsewhere.
I firmly believe that Cataplexy is the best fit, the best condition that explains my symptoms. I'm not saying this because I don't like the diagnosis of Conversion Disorder. I even like it better! It means that Ash won't have these issues. It means that it should've been fixed. But it wasn't.
If a doctor were to say, "You know, I really don't think this is Cataplexy, and here's why, and this condition really does fit better," and then I follow treatment plans and suddenly I'm improving like I should, then COOL!

But if we go back to CD, then we're back to going nowhere. And BTW I am staying on the treatment for Cataplexy. Want to know why? It's working!
And so we keep looking until we find a doctor that has knowledge on the subject, and that can give us an answer.

Bye for now,

1 comment:

Anonymous said...

I have pretty much the same problem, at age 32 became ill to find out it is Narcolepsy/ cataplexy, I have had sleep study showed positive-blood test-both genes, meds do not work, have taken it all, getting pushedform one dr. to another. Now am told not all of my cataplexy is cataplexy it possible could be conversion disorder!!! WOW make up your mind!!!! I believe because it is not a physical disease they dont have a true clue about all of it and because some one is not tec. book they try and find some thing else to add to the problem.