Is there anyone who subscribes who may have been diagnosed late teen to adult or anyone who has had KLS for a really long time; 20 plus years?  Are there any older people with KLS; 30, 40, 50 plus?

Yes, I have posted on both this Forum and Tanis Burnets’ site under “Citydog100”.

Hi, 
I’m new to this forum.  My name is “Joly” because “Jolly” was already taken.

This is to let you know that I am an adult who has had KLS from childhood. 
I wasn’t diagnosed until I was in my 60’s, when the episodes either worsened or reappeared.
I haven’t written before because some feel that the younger people will prefer not to hear it. 
But since Karena is asking the question directly I feel compelled to respond.

With that response, I have even more questions but I am now relluctant to ask.  Does anyone oppose to the continuance of this topic or can we maybe correspond via email or to some restricted area of the forum specifically for the older group or something of that nature?  Also what’s the web address to the Tanus Burnet forum?

Please feel free to ask questions.  I’m glad to answer, if I can…it would be wonderful if my experience could help anyone.
If you, or anyone else, would like to “talk” via email, that, too, is OK with me.  joly

Karena, I misspelled Tanis Burnett’s name.  Her Forum is listed on the Forum Home menu.  I also understand that many of her younger members are corresponding on Facebook.  I too wonder where all of the older KLS reporters are.  With all of the misdiagnoses out there, they are all probably convinced that they have some psychiatric syndrome.  One is really punished by the medical world (my experience) for refusing to accept without question a doctor’s diagnosis.  Like other reporters, I gave my symptoms over and over again only to be ignored or terribly misunderstood (and mistreated for diseases I didn’t have).  Kaiser is still convinced that I am crazy for even thinking I have KLS.  Do we really need to keep the difficulties of this syndrome secret from the younger members?  Also, we seem to hear more from the parents of young KLS patients than from them.

I so agree.  It has taken me 15+ years to get a diagnosis and the diagnosis did not originally come from a doctor.  I took it to my doctor and then got pointed in my true direction.  I have always searched the internet trying to find something that matched my symptons.  I simply googled “I sleep for weeks at a time” one day popped up many mentionings of KLS.  After reading about it all night and all morning because at that point I couldn’t sleep, I knew it was me.  Of all the iffy possible diagnosis that I have been thrown it was the one that simply was me standing in front of a mirror and describing but in someone elses words.  Anyway I think this disease needs more attention.

I have had KLS since 1997 when I was 17…though official diagnosis didn’t come till I was 25! (though had self diagnosed 3 years earlier!) Now 29 and not had an episode since Feb 08 - though longest I have gone is 22 months so still not quite there yet! Hope this is it now but would not be suprised if it always has some bearing on my life. Those who are older shouldn’t talk in secret in fear of worrying younger peope - it is important everyone is open and honest about there experiences.

Nat
xxx

Karena, I too have questions of older KLS reporters.  For example, did you mature early for your “time” and region.  I would be interested in the questions you have.  Thanks.

Hi,
I am totally new to the diagnosis. I have been strugling with these episodes of sleep for the past 19 years without any understanding of what can this be. None of the doctors succeeded diagnosing it and all pointed out for different directions which none found to be correct at the end.  Today, at the age of 40, after finding the information on the internet two months ago, I went to someone who’s supposed to be a specialist in KLS and he positively diagnosed it.  I understand that it is supposed to pass after approx. 20 years - this means that I am almost over it. Or am I wrong and expected to have a long journey ahead?
I am now trying to find good resources and trying to understand better what to do.  it has been terrible 19 years and now I feel like “I found the light”... will appreciate anyone who can provide more information or even “talk” to me over email and share their experience.

I’m so sorry to hear about those long years of struggling with an “unknown.”  There probably are some similarities with my own experience.  If you, or anyone else in the Forum, would like to talk more via email you are welcome to write.

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

For 4 years I have been searching for an answer for why I would sleep so much, etc and to make a long story short, and after NUMEROUS tests, etc…I have been recently diagnosed with KLS.  I just turned 29 in June.  I get episodes every couple weeks and lasting anywhere from 3 days to 2 weeks :(  Is really hurting me at work now.

I am a 41 year old woman from London, Ontario, Canada diagnosed with KLS-Menstrual Hypersomnia, November 2010 by Dr. Brian Murray at Sunnybrook Hospital in Toronto, Ontario, Canada (He is awesome, and without a doubt has the best bedside manner of any doctor I have ever encountered over the years). 

I had several episodes in my teens, early adult life, once sleeping for almost nine months.  I have consistently been sleeping the past eleven years with one reprieve of symptoms that lasted almost a year in 2006. As I am sure any KLS patient can say, I am so thankful to finally know for certain what is wrong with me.

I have been through endless tests, misdiagnoses and generally treated like crap by multiple doctors over the years.  My last diagnosis was, of course, psychiatric. However, through extensive, daily self-documentation of symptoms for almost three years while under her care, the psychiatrist recognized that my symptoms were not just psychiatric and took me seriously when I suggested KLS or hypersomnia and she referred me to Dr. Murray. It only took one appointment for him to diagnose me, though he did all the usual tests before giving me the diagnosis.  I will always be grateful to her for finally listening to me and referring me on to Dr. Murray.

I have a long, long medical history and have endured many life hardships as a result of KLS symptoms and sleeping. Now that I finally have an answer, I can work with Dr. Murray towards possible symptomatic relief, and go on a crusade to educate others and hopefully help others get a diagnosis and help much faster than I did.

Interestingly enough, all my sleep attacks documented for almost three years coincided with my menstrual and ovulation cycles.  The hypothalmus produces all sex hormones. If hypothalmus dysfunction is a cause or contributing factor of KLS, and if endocrinologist and gynecologist can figure out my hormones/pause my menstrual cycle through birth control pills etc, then theoretically, Dr. Murray has hope that I could be symptom-free.

Even if this theory doesn’t work, I am thrilled to have something worthwhile to try, and to contribute to the research he is doing into KLS.

Anyone who wishes to contact me privately, I can be reached at .(JavaScript must be enabled to view this email address).