When I informed Kaiser psychiatry that I thought I had Kleine Levin Syndrome, they immediately said that they had never heard of it.  Then someone called and said yes they had heard of it but that it only affects teenage boys.  They said that from now on I should see my GP.  Saw my GP today.  He said I don’t have this “"kliney" thing and like most American women I am just looking for an excuse for being (40 lbs) overweight.  This was the first time I have ever met this dr. and we spent 20 minutes during which he made it clear that I don’t have this thingy whatever it is.  He did reluctantly make a referral to neurology but did not want to do it.

So, since I am just overweight I apologize for wasting everyone’s time.  Thanks.

Got to love Kaiser!

Let your GP think you’re a freak.  Let whoever think you’re a nut for whatever.  As long as it gets you where you need to be, that’s all that matters.  I’ve looked like the raving lunatic on more than one occasion and if I wasn’t, he wouldn’t have half the answers we’ve gotten over the last year.  You are your best advocate.  You will be the one that gets things moving.  The squeaky wheel gets the grease!

Also, not that I am standing up for the doctors at all, but a lot of them...most, in fact...have no idea what KLS is.  The internet has made it quite easy for the people to self diagnose themselves with all sorts of things.  When I worked in a hospital, you wouldn’t believe how many people came in for things they swore they had and they “knew they had it because it was on the internet!” Unfortunately so many have done that that doctors seem to be brushing everyone off these days.  Also, doctors don’t like to admit when they’re wrong, don’t like to admit when they don’t know something, and certainly don’t want a patient more educated than them.  I would much rather have a doctor be honest and say, “I don’t know but let’s look into this together” than make up some bullcrap lie or brush it off.

Again, who cares if you look like a nut or an idiot, as long as you get to the correct doctor that’s all that matter. 

Take care and good luck!

J

Yesssss, he was pretty brutal.  Thank you (and everyone) for all of the posts made to these sites (especially Tanis).  This is amazingly authentic and supportive.  Again, thanks.  Hissy over, time to soldier on.

Smile.  Everyone is allowed a hissy every once in awhile. 

Clearly, a correct diagnosis is important to those who have unusual conditions.  I have tried to talk to drs. since I was first hospitalized many years ago.  The latest attempt to talk to a dr. only underscores how devastating contact with the medical community can be.  Dr. referred me to neurology.  Neurology does not want to see me.  Instead, Kaiser now has a sleep specialist who is very busy and I can only see this SS person if my gp agrees to refer me.  Even if seen, I dread having to tell my story again and having to take the beating that medical persons think is their duty to administer…

Make them see you.  Force them to see you.  Again, you alone are your best advocate.

Is there anyway you can make the appointment at Stanford and pay out of pocket?  You could always bring back the “proof” to your GP and hopefully educate him or her.  The lack of education is a big thing.

Have you talked to Cindy M through email or PMs?  Has someone named Lori H (I don’t want to put last names on here for privacy reasons) called you?  Those two women have been great resources for me.  They were a tremendous help to my family.

This is a heartfelt post.  I was actually able to speak to dr. yesterday without falling apart and retreating into resentment.  He did read articles on KLS and asked intelligent questions.  Without the encouragement from this site, I believe I would just continue wandering in the medical community maze with frustration on all sides.  My special thanks to unstablchick for lending me some of her very effective courage.

I also viewed the roll of donors to the KLS Foundation.  Deep, deep thanks to all of you.

Awwww!  I am so happy to hear that!  Good for you for speaking up and being your best advocate.  A little bit of courage goes a long way!  Now it will keep growing and growing!  I am so happy to hear this.  Again, if you ever need to talk, you know where to find me