KLEINE LEVIN SYNDROME ( KLS )

topkat1

Hi all at scope. I see I missed the discussion on rare diseases :-( but would like to say that I have been diagnosed with KLEINE LEVIN SYNDROME ( KLS ) . It s a neurological sleep disorder, which has been referred to previously in the media as 'sleeping beauty syndrome' but believe me....that is a far cry from the reality of it! Are there any others with KLS on here? We have a fab community online which are so supportive and informative. I also have athritis in jaw, hands and spine, scoliosis and sclerosis of spine, dropped foot with numbness from knee down on left leg...and a few other little medical ailments. I must admit too that I have not been engaging with scope as I should and will try to be more involved in the future.....

LaughingLolly

Thanks for.explaining your syndrome @Topcat1 . With so many ailments now do you manage to keep positive each day and what helps you in low moments? 

Adam_Alumni

Hi @topkat

Thank you for sharing with us and for being part of our community.

Let us know if we can help you with anything/

topkat1

@LaughingLolly It can be quite difficult to keep positive but I try and laugh a lot, keeps your spirits up doesn't it :-). I have some really good friends who keep me going when I feel low and I try and remember that there are those a lot worse off than myself. Doesn't always work but you have to keep trying, never give up. I also have a really supportive KLS online community where I can offload to those that understand what I am going through. I also come here and read community posts...and knowing I am not alone is a definite positive. x

topkat1

@Adam_Scope Thank you and I will x

Pippa_Alumni

Hi @topkat1, and a warm welcome to the community!

It's great to have you here and particularly great to learn a bit more about Kleine Levin Syndrome. I hadn't heard of it before so it really is good to hear more about it. Please do get involved with the community, and if we can be of any assistance, just let us know!

topkat1

I am so ashamed that it's been so long since I came on here last. I'm not the best at keeping in touch tbh but this is a bit ridiculous even for me  Anyway, hope you are all doing ok, especially with Covid-19 amidst us! I am fine, bit bored as we all are I'm guessing, but no major health issues to speak about thank goodness...just the usual. Keep safe all xx

janer1967

Welcome back and no need to apologise for not being active for a while as long as you know we are here when you need us  and hopefully we can stop some of the pending boredom for everyone over the next challenging month

Tori_Scope

Welcome back @topkat1 As Jane said, there's no need to apologise! You're always welcome here. 

I'm glad to hear that you're well. I think a lot of people are feeling bored at the moment, have you tried taking up any new hobbies or learning something new? 

oxfordjo

Hi, im new here too and found you when searching for advice on kls as i have it too. Amongst an array of other issues that all overlap with each other so unsure where 1 ends and another begins! am just off to do the school run but will be back on here soon. thanks for having somewhere to be honest and open. Jo 

Alex_Alumni

Hello @oxfordjo and welcome to the community. Just to let you know that the original poster of this thread unfortunately hasn't visited since 2020, but I'm sure they'd be glad to know you've found this conversation.

You're more than welcome to reach out here, and if you have any specific questions please feel free to start a thread of your own

Alex

SueHeath

Hello @oxfordjo welcome to the group 
look forward to seeing you around.

topkat1

Hi oxfordjo, 
I am back. Thanks for reaching out. I'm useless at staying consistently in touch and normally just pop in and out....here or other places. But I found during lockdown I switched off completely 😪. Don't know if anyone else reacted the same. Perhaps it was my way to cope..who knows? X

Tori_Scope

I've had some similar experiences @topkat1. I think at times it can feel 'easier' to separate ourselves from the world a bit, and live in a bit of a bubble. I don't know if that resonates with you at all, but I've found that a little bit. How are you doing now? 

topkat1

Hi Tori, oh yes that resonates with me....if I can't cope with things I usually draw away from others and 'go into myself' until I feel stronger and more able to cope. I'm ok at the moment,  just woken up properly since 12 30 tues...ugghh... aching, feel smelly and hungry...I have bn waking enough to go bathroom, take a drink and sml snack ...then straight bk to sleep. I need to catchup on everything now and need some shopping for essentials, so that will fill my day today. All good tho...my head is clear so I can function xx

cat_hug

Hi @topkat1 I've just seen your post and can absolutely relate! I have Narcolepsy with Cataplexy (among a few other little problems like brain aneurysm/strokes/heart arrhythmia) and I know Narcolepsy is considered rare, but I believe KLS is even more so! I imagine, like me, getting a diagnosis to years and was a bit of a nightmare? I've never met anybody with KLS or indeed, any other people with Narcolepsy (except for years ago at a conference on sleep disorders). Welcome and thank you for introducing yourself XX