Hi all -sorry not been on for a while but been having various other things so put hughes in the background especially as i am seronegative now - now i am thinking maybe these things are 'hughesie' after all ! Anyway i need a rant after a horrible neuro appt on wed!
After severe headaches worse at night when lying down (nearly as bad as my meningitis last year) Gp finally refd me to neuro who said raised intra cranial pressure -come in for Lumbar Puncture and CT scan.
Hideous day (sitting in a waiting room with day time tv blaring didnt help the head ! ) had what i thought seemed like a complex partial seizure -could have been a reaction to the dye in the ct - facial and arm twitching and felt like i was in a trance - very dizzy and nauseous. Staff disbelieving and then said they thought it was 'nerves' ! Finally had the lumbar puncture -i am good with hospitals and pain but by the time the new F2 doctor tried over 6 times and then got his senior who tried four more times i was trembling, in agony and felt truly traumatised - not least by their attitude. At this point after asking for some feedback the neuroglist said 'its probably just one of those things -the good news was the ct was clear - well apart from the meningioma - and that's not doing anything' !! She seemed to think i had been told about this previously (i hadnt) and that i was wimpish to think there was anything to worry about !
Anyway basically i am asking people for advice about where to go from here - i am to have a follow up consultation so maybe they will tell me more then but i want to be organised with the right questions - has anyone else had any experience of meningioma ? - could hughes cause high intra cranial pressure ? Is there anything else you would do ?
Thanks for listening and sorry to be a moaning minnie !