Just no end

Just goes from bad to worse. Haven’t been on for a long time now. So many things going wrong. Bladder has nearly packed in, botox been used to see if it will help. Bowel not working right for a long time. Just seem to be getting infections quiet common, 3 in the last four weeks has taken its toll on me mentally. On So much meds to control Spasms it is awful.

Now After 14 months without any answers to my excessive sleepiness they still think i may have narcolepsy. Last results came as “suffers excessive daytime sleepiness”. Thats not an answer, since i have seen this new consultant to do with sleep problems. Thankfully this consultant after getting my GP persuaded to send me to one, wants to have 3 different tests done on me because of my passing out is the only way I can describe it. Last night had one of my awake paralysis episodes that scare the life out of me. Cant move cant scream nor do anything.Have had quiet a few of these. His eyes lit up when I said this. Has anyone else had one of these? Would be interested to hear about it.This consultant said I may have “idiopahtic hypersomnia” which means may need more sleep than general population. Means nothing can treat it. Still cant drive and may never drive again which is taking its toll on me mentally. It is the not knowing really which is getting to me. At least if you knew one way or another you can try and adjust to it. Can`t think straight. Taken me a few hours to write this. That is how tiring this disease has become. My MS consultant has requested another MRI to find out what is going on. Just never seem to be in remission. Tired because of this awful disease as you all are aware of also.

Help needed badly

You have such a lot going on,you really have, i am sorry i have no advice for you,wish i had, you must be so distraught

i really hope you get some answers and some relief from your symptoms too.


J x

Hi BE. Sounds like you are really going through it . I’m undiagnosed but have been through the mill with various ailments (severe psoriasis ,arthritis,bladder problems etc)and with chronic illness I have learnt that things can let up , even if they are progressive . I went through some terrible times in the past and saw no future . Be kind to yourself right now & try not to worry of the future

Kat x

Oh love, what a lot you have to deal with.So have you been diagnosed with MS then? Sorry to ask, just not sure from your post. The awake paralysis episodes must be more than awful for you!

I hope something improves hun, I really do.

Love Pollyxx

Also have you thought about some possible counselling for all this ? I’ve got my first session tues , hoping it will help me x

Been Official since 2012, but first major clinical abnormality 2006.


Been to counselling before. Just seem to have more problems all the time.