I have been under the impression that I only had chronic fatigue and depression for many years. I just self-diagnosed myself less than 1 week ago with the KLS. Of course, until I went to a psychiatrist, my F.P.M.D. would say, “you just need to exercise more”.  That seemed difficult when your muscles are actually weak from lying in bed so much. I have recently been making an attempt to lift light weights to build up my strength, during my remissions. I got validated more when I sought out a Psychiatrist for help. Now I would like to progress to a physician in my area or state, who is knowledgeable in this new KLS diagnosis? Where on this website can I find such information. Thanks!  Donna

Hi Donna,
I’ve been diagnosed with being Bi-polar and depression. I’m not Bi-polar but get depressed w/KLS symptoms.  I wish you quick success in finding a
Dr. for diagnosis.  I go on Wednesday to a Neurologist.  Hes new to me and its always a bit scarey at first to put faith in a Dr. whos going to be medicating
me. I had an MRI done and sleep study. I’m sorry I can’t help you with the info. you need but know that You aren’t alone. I sent you an e-mail earlier and I don’t think it went through.  My name is Amy {Akaila}. e-mail

We were told a number of things.  My son has other health issues on top of this so there always seemed to be an excuse.  First it was, “Be happy you have a kid that still takes naps.” Then it was “it’s from all the medication he takes.” Then it was, “Because he still has a lot of seizures, he is just tired from them.” We were also told, “He’s probably having on continued long seizure throughout the day which wears him out.” We changed his meds.  We took away meds.  We raised other meds.  We tried the “crack in a pill.” Unfortunately we can’t take his meds completely away as the seizures will come back full force.  Then we finally got the truth...."We don’t know.” I’d rather them tell me that then make up some crappy excuse.  Now that all his specialists agree that this is what it is, we are being sent off in the right direction...even if it takes forever to get in.

Like many of you, I have alwlays been on the lookout for something that might help me understand what’s wrong with me.  A few years ago, a local psychiatrist and his patient appeared on a news segment.  The doctor specialized in boarderline personality disorder and the patient was reporting that she was completely cured, symptom free.  She went on to describe her confusion and inability to work and how the doctor had used his therapy and medication to relieve her of boarderline personality disorder.  I bet she has KLS and the spontaneous remission was mistaken for a cure of a different disorder.

I know KLS is rare, but I wonder if other doctors have experienced such a dramatic reversal in a patient diagnosed with something that is not usually so clearly cured.

Being misdiagnosed and living undiagnosed is a tragedy on top of a tragedy. There is the issue of misunderstandings, judements, and mistreatment that the sufferer has to endure when they are misdiagnosed or undiagnosed. The worst being, it’s a behavioral problem or a choice. It’s a lot easier to get on with life once you know what it is you’re dealing with. Diane

The really sad part of being misdiagnosed is that I presented with symptoms that were clearly KLS over and over again without any recognition on the part of drs.  Instead, I always had the feeling that I was supposed to behave in accordance with whatever diagnosis I was given.  There has been a lot of unnecessary Hell and of course, expense.  And what kind of twisted joke is it that made the drug of most benefit (stimulants) a drug that causes drs. to go insane and see drug addicts everywhere?

Hi Cititdog,
First of all I want to say I’m sorry for all the pain you must have endured for the many years of not knowing what was wrong. My heart goes out to you. Could you please explain your last sentence referring to the stimulants? Do you have an opinion on stimulants? From my perspective, I would not want my daughter to take them because of the derealization symptom. There is no way I want my daughter functioning out in society when ill. And then when she’s not ill, she wouldn’t need them anyway. The drugs that drs. are so willing to prescribe, is frightening. If taken for a long period of time, I’m sure they have side effects. Since they don’t seem to help, why do it?
Diane

Hi, regarding stimulants:  Within the past two years, drs. (psychiatrists) have been more willing to entertain stimulants and although they didn’t suspect KLS, they did hear me say how difficult it is to function at certain times.  They prescribed ritalin, adderall and then dexidrene (for ADHD).  None of the three did much good.  I was very talkative but the meds did not fully address the sleepiness (at first I had insominia), inability to function, or the APPETITE thing.  Perhaps they were not strong enough or I am just too old.  There is no danger of my becoming addicted to any of the three nor am I still taking any of them.  However, when I was in my 20s, I was working in SF when I had an episode and had to miss some amount of work.  A dr. diagnosed Mono, but that wasn’t it.  I finally began functioning again and was able to return to work without losing my job.  From SF, I moved to Washington, D.C. to a really terrific job.  Again, I went into an episode and realized that I would lose my job it I didn’t do something.  My boss was very concerned and was thinking of sending me back to California.  Someone suggested a dr. and he heard my symptoms and prescribed a medication he himself had had manufactured.  I understood it to be methamphetamine.  The little yellow tablets with sparkles in them were a life saver.  I functioned just fine.  I took them for over two years and never took more than one tablet a day.  When I did return to California, it was in the midst of the hysteria over drs. prescribing stimulants to women.  End of meds for the time being.  It did not dawn on me to contact Dr. Singer in D.C. and ask him to forward medication especially since I had been shamed into believeing I was a nasty drug addict.

As for your concerns over medications, I think you are right.  I have taken many meds that had no effect on KLS whatsoever and I honestly have no idea what the long-term effects might be.  In addition, when I did finally go into a long remission, I was glad I was not on any medication.  I was able to pick up a life without having to maneuver around side-effects. My best wishes and thoughts to both of you.

For us the misdiagnosis was “rapid-cycling bi-polar.” The rapid cycling part is important because it helps the mental health professional explain away the lack of manic symptoms, a hallmark and necessary component for this disorder.  We actually had one doctor tell us that the cycles must be happening so quickly that we do not even see them. 

Newbie’s comments really resonated with me, that undiagnosed or misdiagosed KLS is the real tragedy because once you know what you are dealing with the whole dynamic changes from treatment to support.  There is clearly work that needs to be done to educate medical professionals out there about KLS so that we can shorten the mean time for diagnosis and spare people that indignity.

The foundation is working to promote awareness and this is bound to make things better for others in the future.
Gaylene