How to Find the Right Doctor When Living With KLS

How to Find the Right Doctor When Living With KLS

Every KLS case is similar yet so different. What may help one person, may not work for another. The brain is so complex not every person’s reaction to a treatment is going to be the same. You may need to experiment with different medications and dosages to help you with your symptoms. That is why it is so important to find a good, compassionate doctor who is right for you. Finding the right doctor needs to be a top priority. Once you find the right doctor that is willing to work with you, your quality of life may improve, your health care will improve, you will feel safe sharing information, and you will know that your doctor cares about you. Finding the right doctor for KLS is not going to be easy. It will take effort and patience. A good way to begin your search is to use information from your current doctor’s experience. If you are seeing a doctor at the moment and are unhappy with the care you are receiving, ask yourself these questions. 1) What do I like about my doctor? 2) What don’t I like about my doctor? 3) What type of environment do I want? Writing down your likes and dislikes will provide you with a good list of what you want in a doctor.

How to Find the Right Doctor When Living With KLS

How to Find the Right Doctor When Living With KLS

Because KLS is rare, it may be difficult to find a doctor who knows about KLS. A good starting point is going to the KLS Foundation website and looking at the Doctors Familiar with KLS page to see if there is a doctor in your area familiar with the disorder. Here is the link:

If there is no one on the doctor’s list in your area, try calling one of the doctors closest to your area from the KLS Foundation’s list and ask for a doctor’s recommendation in your area. Or you could ask if that doctor would be willing to see the KLSer. You could search for a Sleep Specialist or a Neurologist in your area. Many Neurologists and Sleep Specialists are interested in rare conditions and would love the opportunity to work with you. Another suggestion is to ask for referrals in the KLS support groups. You can join the KLS Support group by clicking here: KLS Foundation Facebook Support Group. There may be a KLSer in your area who will know of a doctor familiar with KLS.

Doctors see many patients throughout the day, so you need to be prepared and ready for your appointment. When scheduling your appointment to see a doctor, ask how many minutes your appointment will be. Try to schedule enough minutes to get through all your concerns. Be prepared with a list of questions you want answered. An example might be, “What medication can relieve this symptom?” Be prepared to write down important points. Ask the doctor to write down any treatments, symptoms, medications, etc. you may want to research for yourself so that you can decide if that is the approach you would like to take. Having someone with you at your appointment is very important. That person will be your second set of ears and will be able to catch things you may have missed. Remember-you are the expert on KLS. You know your symptoms, your body, and your experiences. The doctor knows treatments. After you decide on a treatment together with your doctor, be sure to evaluate how that treatment is working. Stay on top of your medical decisions and be proactive in your care.

I hope you found this post helpful! If you did, please leave a comment below. I love hearing from you!

With Love,


P.S. If you haven’t purchased the Kleine-Levin Syndrome (KLS) Guidebook, you can do so here: 

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