i thought i already introduced myself here before.  but i’m currently in the end of a recovering stage of my episode and can’t seem to find any posts from me
on here. either that or i can’t figure it out.  i’m still a little nervous and uncertain.

anyways hi.  i’m really depressed right now. as i’m sure all of you are during episodes. 

this disorder makes me feel so horrible and failed.  i came from being a street kid who was headed for jail or death. i met this girl and started straightening out my life and married her. i started working my butt off and within 3 years had worked my way up high enough that we were able to buy our first house. after having bounced from job to job for a couple years i finally got a career started as a mechanic and was just about to cross the 2 year mark at the dealership. i was so happy. i had a good wife, a nice house, and a great job that i had been at for almost 2 years.

then i went to bed one night…......................................................................................

lost my job, didn’t have health insurance, maxed out every credit card with doctor visits that all ended with the doctors saying:  “huh…....interesting. never seen anything like it”.  finally after having maxed out all our credit cards and still not having an answer i stopped going to doctors. i’ve never had good experiences with doctors and this didn’t make me feel any better about them.  my wife re-enlisted in the military so she could make enough to pay the medical bills, and things started going downhill from there.  after about a year of that, i tried getting another job. but every place asked why i had been out of work for over a year.  so i told some places that i took a vacation, and i told the others about my condition.  well nobody hired me.  after a while i did get a job at another dealer without telling him about my condition.  that lasted about 4months and then i “crashed” (that’s what we call the episodes) for almost 3 weeks.  so i lost that job too.

after a couple more years without work and the bills piling up more and more, we decided to try and open our own business.  we had this bright idea that if i couldn’t get work, i’d make my own work.  so we opened a auto repair shop.  well that only lasted about 1 1/2 years.  now we had to file personal bankruptcy.  i’ve sold just about everything i had except for our vehicles, house and tv so i could try to pay bills. and now i’m thinking about selling my truck so i can pay one more bill.

it just seems like everything that i’ve worked so hard for is falling apart around me.  sometimes i wonder if it’s just a matter of time before my wife can’t deal with this anymore and leaves me.  i feel like such a failure not being able to support my wife and pay the bills.  i’ve pretty much just been a stay at home husband trying to take care of the house and doing little side jobs out of my home garage to make a dollar here and there. 

and now to make thing worse (as far as stress of not being able to provide goes)..........................................we’re expecting a baby. 

we’ve tried filing for disability a couple times already, but they keep telling us that the only way to get disability is to first be properly diagnosed, and then that you have to actually be disabled. and since i don’t need a “baby sitter”, i’m not disabled, and therefore can’t get disability.

what is a guy to do???

are any of you married with KLS??? do any of you with KLS have a kid??? how do you make it work???

what do you do for income with KLS??? how do you make due???

does anybody here get disability or know anything about getting disability with KLS???

is there any real reason to continue going back to all these doctors if they don’t even know anything about this???  (i’ve had my wife
and a couple friends ask their doctors if they had ever heard of kleine-levine syndrome, and all the doctors apparently just had a blank stare. except for one
who went running out of the room to go look it up and then said he had never heard of it.  i’ve only had very very bad experiences with doctors, and the first year of having KLS and going to doctors for almost 1 year with no result didn’t make me feel any better.  what’s the point in going if they’ve never even heard of it???)

mmhhh….....i just feel so lost.  maybe some of you that are also going through this could help with some advice or just some chat.

do any of you guys have instant messengers??? maybe we can talk sometime.

Hi there my name is Steve I live in California and have had KLS since I was 17. I am 36 and had my last episode in March of 2008. I am so sorry to hear how difficult things have been for you. I am married and in April it will be 15 years, I have 4 boys, the oldest is 17 and a senior in high school. I also have a 14 year old, an 8 year old and a 6 year old. Things have been difficult for me having KLS and trying to support a family of my size as you can imagine. On top of having on average 1 or 2 episodes a year, my wife until recently did not work so when I got an episode of KLS I had no income coming in. We received assistance from welfare and my parents to get by financially as well as disability insurance once I was diagnosed when I was 30. I want to encourage you to find a way to get some kind of medical insurance and go see a neurologist. I was unable to be diagnosed by a regular doctor because most of them have never heard of KLS as you well know, but a neurologist should be able to diagnose you which will enable you to file for disability when you have an episode. Do you have a welfare system where you live? If you do you may be able to qualify, which could help you out with income, food and medical, it has been helpful for me even though I cannot stand being on assistance I desperately want to be able to provide for my family without assistance from the state or others. I have lost a couple of jobs over the years due to KLS but most of my employers have been understanding and compassionate. I never tell my employers about my KLS until I have an episode and then my wife calls my employer and explains it to them. Once I told an employer after he offered me a job about my KLS and before I actually started the job he called and told me that his boss had found someone within the company the same day he hired me and the position went to the other person because he already worked for the company even though the employer told me that they would make due if I had an episode when I told them about my KLS the fact that I lost the job before I started was due to telling them about my KLS. I would not recommend telling an employer before you have an episode. My KLS has been hard on my whole family but I also know that it has brought our family closer especially my relationship with my wife. She does everything for me when I have an episode and even though it is so hard for her I know that she will always be there for me and that brings us closer and makes our relationship stronger. My kids do not fully understand what happens to dad when I have an episode (the little ones) but the bigger kids understand that it is just one of those things, but it is still hard for them to see their dad that way. I want to encourage you to hang in there and make the most of every day, because you never know when another episode is coming. I know how hard it can be for a guy to be so helpless and unable to provide for your family but you need to focus on what you do have. You have a wife who stands by your side and is there for you and you have a child on the way. You are truly blessed!!! and like me you need to focus on what you do have not what you have lost, I know it is difficult but I have learned that KLS is something that we cannot control it comes and goes at will and all we can do is ride it out and let it run its course and then when the episode is over you get back up and make the most of every day until the next episode. I hope that something I have shared will encourage you and give you hope and I hope we can have a chance to talk again because we cannot do it alone we all need the love and support of others.

Hi…I am so sorry to hear how difficult things have been for you. My 19 year old daughter has KLS and we lived with years of confusion and misdiagnoses just like you.  It was very hard to prove that anything was truly wrong with our daughter. She would live life in between episodes as normal as any other child growing up. But during an episode, things were horribly wrong.  She had been misdiagnosed by doctors. We had horrible experiences in hospitals. And we were deathly afraid to even take her in for medical help. She went through a battery of tests: EEG, CAT scans, MRI’s, blood test, etc that did not show anything was wrong. But finally, it was the functional MRI (fMRI) that clearly showed scientific evidence that there is a malfunction happening in the brain when in an episode. Of course, no one knows the cause of the malfunction but parts of her brain showed almost no activity. She also had a reduction of blood going to the thalamus region of the brain.  The past year and a half our daughter has been in constant KLS episodes. She has not attended school or work or any social activities for over a year now. But getting a diagnosis really did help in going down a road of recovery, acceptance, and help. You can go to the KLS Foundation Home Page and click on KLS Info and Resources and then click Doctors familiar with KLS. Maybe there is one somewhat close to you. That is how we found our daughter’s doctor. If you do find a doctor willing to listen and wanting to learn about KLS, I could provide you with our doctors’ name and contact information. Maybe your doctor could then get some additional information from another doctor with knowledge in KLS. After your diagnosis, you could then apply for benefits. These are the words that other KLS sufferers have told my daughter that I want you to know: You are not alone. You WILL get better. You WILL have many many good days ahead. This WILL go away one day. This is not permanent. Just hearing those words give her hope and something to look forward to. Keep pressing forward on finding a doctor that is willing to listen and learn. Maybe you could do phone work first. Meaning maybe your wife could call and screen the doctor by asking questions before going in for an appointment. That is what I started to do when we decided to find a doctor for our daughter. That will save a lot of effort and money. Write anytime. Best, Diane