Hi everyone, just a quick hello to everyone on the site:) my name is Simon im 29 and im from England, I was diagnosed with KLS in Oct last year.
Im currently in a 9 months long episode with varying states of conciousness. Will beat this off in the end tho!:)

Hope everyone is well and episode free!

Hi Simon
How did you get KLS diagnosed in the UK please? We’re in London and none of the consultants or GPs my daughter has seen has heard of it. Any suggestions of where to go to get our home-diagnosis confirmed please? Is there any UK information I can show our doctors which might jog them into looking into this with us? What have you tried to avoid episodes? We’re thinking hypnotherapy might be a way to go. Any suggestions? Thanks, Gill

Hi Gill, im sorry you are having difficulty in gaining a diagnose for your daughter, sounds like its KLS to me from reading your posts. I was first diagnosed with KLS in Sept 2008, after going undiagnosed since may 2006. The person who diagnosed me was a consultant neuro from Sunderland Royal Hospital and Newcastle general hospital called Dr Peter Cleland. I have also been to see a proffessor David Nutt at the imperial hospital in London, but I know he does not work there anymore, he also agreed that I had KLS, that was in june last year as a second opinion.
Treatments I have tried inlcude : Carbermazapine, Sodium valproate, citalapram, liothyronine, all did not improve my symptoms. I am not well at present, its been 18 months this month solid. Thats uncommon for KLS to last in an episode that long, normally I have them for 2 weeks then well again.
My only trigger for KLS episodes was alcohol, I have never had an episode without consuming alcohol. obviously I learned my lesson the hard way!!
At the moment there are no treatment’s and for some people there is no way to avoid episodes,for some there is like me.

If you want to speak in more detail my email address is .(JavaScript must be enabled to view this email address)

Take care

Simon

Hi Simon

I’m sorry to hear you’ve been so unwell for 18 months. Thanks for letting me have the names of two doctors who actually acknowledge the condition exists – we haven’t been so fortunate with our practitioners, so I’ll look your guys up.  I wanted to avoid the heavyweight drugs – no one seems to have had any success with them – so we are trying hypnotherapy. It’ll be difficult to know whether it’s been successful – we’ll only know if it hasn’t succeeded if another episode comes on.

Gill

Hi Simon, Annette here. This is my first post on here so just making contact.
Hi Gill, we are from Hertford, Herts so not far from London. Our son is 19 and has had KLS for 7+ years.
He was diagnosed last summer, maybe we can help?
My e-mail is .(JavaScript must be enabled to view this email address)
hope to hear from you
best wishes to you and your daughter.
Annette