I am currently diagnosed cis and have been since 2015 after episode of optic neuritis, leg weakness and speech problems. I have over 20 brain lesions and one in spine which was only found on first spine mri last year, after complaining of leg weakness. I have positive lumbar puncture. I have contacted ms nurse at least twice in last year since last appointment, reporting new symptoms. My appointment with neurologist was cancelled for April this year and rescheduled for December which after complaining about time between cancellation was then changed to August. I decided to contact neurologists secretary last week and asked if she could enquire about having an mri before appointment as I’ve had new episodes. Today I received a call from her advising me that my neurologist said that I have to contact ms nurse if I have new symptoms! I am so frustrated! I said to her to let neurologist know that ms Nurse has already been called and to my knowledge contacted him twice re episodes this year. She stated there was no letter from ms nurse in system. As far as nurse told me she emailed him and I told secretary this. She informed me he’s now on holiday but doubts he will arrange mri before appointment. I’ll be interested to know if he even knows about any new symptoms. What’s the point of reporting symptoms to ms nurse when communication seems to be non existent! Either that or did secretary actually spk with neurologist at all when I enquired about mri? Guess I’ll need to wait till August, then no doubt he will order new mri to look for changes and I’ll have another 6 months wait!
What a run around you’ve had.
Have you tried contacting the hospitals Patient Advice and Liaison Service (PALS)?
Their contact info should be on the hospitals website.
Thanks, I’ll wait and see what he says at appointment in August and then decide on where I go from there. I’m just shocked they obviously never checked or don’t have communications with nurse on file.