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 .(JavaScript must be enabled to view this email address)

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

When I first ever had an episode I was made to spend a night in a Mental Health Ward because they thought I was having a breakdown.  After 24 hours they realised this wasn’t the case and admitted me to a neurology department (I was unaware of this transfer due to being heavily sedated because of my unusual behaviour), where they diagnosed me with Encephalitis (Encephalitis is an acute inflammation of the brain, commonly caused by a viral infection. - Wikipedia).  They treated me with antibiotics and anti-convulsant drugs and then I got better so they thought that was it and I would be fine.  I then got ill again which they then diagnosed me with a rare kind of Epilepsy - 2 consultants thought this was the case, and I continued being prescribed anti convulsant tablets - Carbemazepine).  A Neurologist in London said I didn’t have epilepsy and I could come of the medication and thought it was something called ‘Idiopathic Recurrent Stupor’.  This was in 2002, and so by putting this into Google I eventually came across KLS and self-diagnosed.  It was another 3 years till I found a doctor to confirm this, but I had also been told by another consultant who was aware of this possibility of Idiopathic Recurrent Stupor, that it was not anything like this but that it was Psychological and because of something that had (supposedly) happened to me when I was younger that it made me have these episodes!!!!  (This was particularly disturbing and disgraceful for me because they were working on the basis that the longest episodes were when I was away at uni, from my parents - and the possibility that they were behind this alleged trauma! Therefore being away from them made me stop having episodes!!) 

But I have now been properly diagnosed with KLS, by a consultant who has seen it before and says I have a ‘typical case’ of it.
And just by talking to people who suffer from this I know this to be the case. Misdiagnosis caused me years of frustration and confusion and although there is no cure for KLS, just knowing what I had was a huge weight off my shoulders.

these are only the ones that i remember them trying to diagnose me with.

schizophrenia
post traumatic stress syndrome
depression
manic depression
nervous breakdown
surpressed childhood issues

and one day we went to a new doctor while i was actually having an episode.  my wife said i wouldn’t
say anything or do anything and just sat there real quiet and the doctor kept looking at his watch and
tapping his watch and finally said:  “if you guys aren’t going to cooperate with me and tell me what’s
wrong then you’re just wasting my time. please leave”.

My grandson was first diagnosed with febrile seizures, then autistic like syndrome, then no diagnosis for a while, however a 3 day brain monitoring showed his brain “slowed down” for a while which posed a mystery for the doctors.  When he slipped into the longest episode ever, 14 days, in 2006, an astute attending Psychologist at Children’s National Medical Center in Washington, DC connected the dots and we were learned about KLS.  We have the support of the school he attends in WDC and his fatigue and sleep patterns are documented daily.  Knowing about this diagnosis gives us something to work with, however, now we have to learn so much more and educate people, even the hospital.  It is frustrating to me as his caretaker as we seek a qualified person in WDC who can treat him.

Drugs and depression were the first thoughts that kept coming up before KLS was diagnosed for my son.  There was a link to an allegra-D prescription, then it was thought it was an extreme allergic reaction due to timing of the year, that led to allergy tests and then allergy shots.  From another post, seems at least one other thinks allergies may trigger episodes.  Not sure that is true, but allergies certainly are there.  A combination of exhaustion, a growth spurt, allergies and a mild case of strep were the final word on the first episode.  KLS self-diagnosed with help from a neighbor that learned about it on Discovery Health which lead us to the KLS Foundation and then a proper diagnosis from a physician.  Education is key.  Can’t diagnose something you don’t know about.

Hello, I like many of you was misdiagnosed too and with many different things, but even more frustrating that a misdiagnoses was when a doctor would just treat me like I was crazy or lazy or tell me to push myself or that it was my fault that I was the way I was because I wasn’t getting up and out of bed enough and it was making me feel sick. I also had doctors tell me that it was depression but I felt like, “of course I am depressed you would be to if you could not get out of bed and didn’t know why!” I also had a therapist tell me that I had multiple personality disorder, post traumatic stress disorder, and disassociate personality disorder among other things. Also for me one of the reasons that it was so hard to get a diagnoses was because I had been very ill most of my childhood and so they had a long list of things that they thought that it was before KLS. I hope you all the best and hope that you soon find a doctor in your aria that can help you. Jessa