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.